Wow! I can't believe that you seem to be getting all these procedures to help you. It's asthough thr medics have just realised how much help you really need. I'm so pleased for you after all this time. I'm not al all surprised you've been so emotional, Neil. You have had months of nothing, and then without warning, it's all happening. I think you and Teresa are wonderful, inspirational people. I'm sure off camera life can be hard for you both. But you stand by each other because you are a team, and that's what matters. Thank you for the mention by the way..I also like it when you mention other subscribers and give their channels a plug. 😀👍
God ,I feel your pain and depression, I cry ever day, very emotional, you feel like your watching the world go bye and your stuck on the bench watching , I can't sit bye the window or outside cause I get so depressed, hope you get some relief friend
Bless you Chris, yes I know that picture you describe very well and I’m so very sorry you are suffering. Thank you for your kindness, and I do hope you start to feel better soon 💞
It is so sad that these things have to get to a certain point before the physicians will "jump" on things. I can so relate to so many of your ups and downs. Keep your hope up...Love to you both
Yes it is Tamara, there have been a lot of set backs because of the necessary 2nd opinion from the professor, then the dictations got lost for a month. Meanwhile I just get worse and worse. I can tell you though l, for the first time in MONTHS I’m doing better. Video will be coming soon. Much love to you from both Teresa and I. 💞
Thank you Avril, all I can say is they are working. Today I’ve been amazed, another video coming soon. Much love to you from both Teresa and I. We hope you are well. 🙏
I't such a shame that you had to get that worse to get some attention! I've seen you very worried, and I totally understand you, taking such powerful meds is always worrying, but I believe that checking your blood so often would minimise any major side effect that may occur, so be strong and positive! I really hope you are doing better now, and I look forward to your next video. Thank you both for sharing, I want you to know that your videos help me a lot going through the disease. A big hug from Italy!
Thank you Sara, I’m super pleased to hear my videos help you a lot🙏 Yes I’m having weekly blood tests for six weeks to make sure the new immunosuppressant drug isn’t doing anything sinister. I am doing better, video coming (bear with me). Take care.
I'm so glad someone is doing something to help you at last. They should be ashamed of leaving you hanging like they have! I am hoping for good news in your next video. Hugs to you both.
Hello J, and thank you for that. Yes, it's been a long time coming but finally I feel I'm getting the help I need. And it's working! I think you're going to be rather shocked at my next video. Be well.
Well done Team Bradley! So pleased you're finally being listened to Neil. The treatment sounds really hard and extremely exhausting but sometimes we just have to go for it and believe it will work; I really hope it does and the side effects are minimal. Thanks for sharing your journey as always
Thank you very much Bel, we really appreciate your kind words. Yes, the treatment isn’t easy and it’s quite scary as well. I’m doing ok so far (another video coming soon).
Thank you Wanda, that's kind of you. I'm doing a bit better now, video coming soon so look out for it.. not to be missed :) Hugs to you also, from the both of us.
Wow !!!! Great news Neil. You look shattered/exhausted. I’ll be watching your progress with much interest. My mobility up the pole the past few days. Teresa, you’re a dream of a woman. Love to you both for the journey ahead. 💖⭐️💖🇦🇺 Andrea
Thank you Andrea, we really appreciate your support. Teresa sure is my rock, and I don't know how I would manage without her. The other day I brought her some flowers and a Thank You card to show how much I really do appreciate her. Much love to you too, from the both of us. xx
I can totally relate Neil, I’ve worsened in the last 12 months. I understand where you’re coming from and feel the upset, anger and frustration. See my neurologist December 11th, see what he says. I can’t walk now, shake with ataxia, can’t hold a stick straight because I wobble and the spasm in my leg weakens me. I’m following your journey closely, and hope all goes well x
Thank you so much Karen. I’m sorry things aren’t good for you at the moment, I truly am. Let’s hope your Neuro comes up with a good treatment strategy. Fingers crossed 🤞 for you. So pleased you’re enjoying our journey as much as we enjoy doing the videos for you. 💞
I hear you Karen. My legs, particularly the left, are so weak. Weird numb patches over my skull with tingly feelings and electric shock twinges all over my leg. Plus a thousand other weird symptoms. So tired. Stay well Karen.
Why do we have to deal with and struggle with so many symptoms. Always something new pops up. So tired of fighting everyday, and I find it difficult to be jolly all the time. Alas, we’re strong (we have to be!). My best wishes goes out to everyone dealing with this condition.
Oh Neil, I have so many words to say but don't know the words to say.I was diagnosed at 32 and everything was taken away from me. I am now 40and I know I've mentioned my symptoms to you in the past, but I completely empathize with everything that you are saying. It brought tears to my eyes to watch your video because I've been in your shoes. It is such a helpless and hopeless feeling. It's just downright scary. Keep fighting with everything you have. The fighting has kept me going even with one arm left.would you believe with one arm and the rest of my limbs paralyzed, I still live on my own? No caregiver, no assistance to get me into bed or on the toilet.I do have someone come every other day to just be there while I take a shower. and the only reason why I say this is because it's my fighting stubborn attitude that keeps me going. I sure hope this medication helps you. Medications like this or pretty scary because of potential side effects. Take care of yourself and keep away from his many germs as you can. It's hard during this time of year but your poor immune system is going to be shot.
Dear Friend, I think that your fighting stubborn attitude is absolutely the right way to be!! It is your shear determination and strength that keeps you FIGHTING and managing best you can despite your unimaginable challenges. I THINK YOU'RE AMAZING!! Managing all on your own, with paralysis and one good arm .. I'm taking my hat off to you right now!! I honestly don't know what I'd do without my Teresa, I'm so VERY lucky to have her. I've felt that helpless and hopeless feeling, on a very regular basis recently. Since having treatment a couple of weeks ago, not quite so much, as I've regained a little bit of mobility back.. not much just a little to improve how I feel (video is coming - not to be missed). Sending much love to you from both Teresa and myself. Please take care. xx
Neill so many of us are praying for you!! You two have shown such tremendous strength and perseverance through all the difficulties. You are both such and inspiration 🥰
Thank you, that's so very kind of you to say .. Teresa and I feel so humbled to know that we inspire people such as. I hope this message finds you well, blessings to you.
I have taken the tablet form of methyl prednisone and they work the same as the iv. I just hate the fatigue and extreme swelling I get with the steroids. Here we have home service where they deliver the steroid iv packages and a nurse come out to insert the iv and do the first dose and then I hook up each day for 5 day. I watched that video and I am so hoping that they get you back to walking around to feed the birds and garden. Well probably not garden because it’s cold. Lol. Thank y’all for everything y’all do. The information is always so interesting!! Talk soon.
Hi Patty, that’s good they can do it from home for you, saves a lot of travelling like what we had to do. It was very tiring. For me, the same strength tablet steroids didn’t have the same effect as the IV, in fact I didn’t notice any improvement. New video scheduled for publishing tomorrow at 8pm UK time, covers the three days whilst I had the steroid treatment.
Thanks Tara, appreciate it .. It's been a tough 12 months for sure, but finally I think I'm getting somewhere and my mobility seems to be improving a little. x
Hi Neil and Teresa, well I am so glad Neil that you were finally given the treatment you need! I hope it has helped so far and that you two are feeling some relief from the difficult year you have shared. You look like soul mates to me, I would love to see a video of how you both met🥰
Hi LW, it's funny you should say that because Teresa and I have always felt we are soul mates. Ever since the day we met, we "clicked" .. best friends since we met in 1990, until eventually life brought us closer together and we married in 2014. Our relationship just grows stronger and stronger the more life throws at us, we've never argued or had a row. We agree to disagree sometimes, but that's it. We consider ourselves to be quite unique, and very very lucky to have found each other. Teresa actually read your comment to me the other day, and said that is a really good idea for a video. Our life has not been easy though, not just illness.. a very bumpy ride .. Best to you. x
Wishing you well! Im not in quiet the same place, but I feel the despair, particularly with the inconsistency and horrendous waiting times, as I previously mentioned on another video, I got to a prominent large Hospital & my neurologist admitted his department is in REAL trouble . Hope its going well, you have great support from your lovely wife, very fortunate as I'm sure you know 👍
Thank you .. a lot of my suffering could have quite easily been avoided if they'd given me IV Steroids when I continually kept saying to them I'm really bad, never been this bad etc etc. But they wouldn't budge until I'd been to see this professor for a 2nd opinion. Thank you, things are going fairly well at the moment, and I seem to be improving. Thank you also for the kind words about my wife, she amazing.. and I have so much love and respect for her. Literally couldn't do this journey without her. Very best to you.
Hello Neil from Canada. Thanks for sharing all that it's not easy. It must have been hard not to be upset about their reaction. Like you said you called many times, it's not fair. I actually had a hard time today too. I started havind really bad gait problem yesterday weakness in neck and legs. Im very retissent to go ER because they dont care. They always tell me there is nothing wrong and to find hobbies. So, today it was going worst. I went to the clinic walking very slow with a stick trying to swing my legs without falling. When the Dr examined me he couldnt believe I had been that bad few times in the past year witout treatment. It quickly went worse while I was waiting there. I couldnt lift my arms and hold my head. He gave me 50mg prednisone. He even called me at home to tell me my blood test where good. Ive never had a dr caring and listening and not doubting what Im saying before. Like you I might start to have a little bit of hope again. I hope the presciption of 25mg/D is gonna be enough. I just want you to know you are not alone because I feel extremely alone with no support at all and I dont wish that for anybody. Its the worst thing. The Dr told me depression is a side effect, be careful, take care. Teresa you are amazing I hope one day I will have a caring person like you at my side.
Hello !! :) I'm sorry to hear you're having gait and weakness in your neck and legs, this really can't be easy to deal with. Hopefully, this will be just a small set back and a temporary thing. I understand you not wanting to visit the ER, how patronising them telling you to go and find some hobbies (shakes head). Reading on through your message however, I am THRILLED you have finally seemed to have found a Doctor that CARES.. super pleased for you, and like you say it really does give you a little bit of hope doesn't it. And sometimes, HOPE is all we've got isn't it. It's hard feeling so alone, and I'm so terribly sorry to hear you feel like this. At least you know there is a nice community here to chat to if ever your feeling down. Take care - Neil & Teresa xx
Oh I'm so pleased for you Neil. I get the low mood and not being able to do as much. The not being able to walk for me also is so frustrating and upsetting. I think I can do it and I bloody well can't. That's my theory take what your given. Good luck hun hope you soon start to feel a bit better. Love ti you both
Hello Michelle, and thank you. It's the same for me, and it's a terrible blow isn't it .. being mobile for 40 odd years and then all of a sudden can't walk or do the simplest of tasks. It really does cause the low mood and depression, for me I find talking to people such as yourself, and many others on my channel a real therapy though. Much love to you.
Omg this back pain strange type symptom has been a recent new one for me that made walking very difficult for me. It was in my left side and my right leg was swinging out to enable me to walk. Most of my symptoms were predominantly in my right side but since what I feel was an intense episode during end of Sept/Oct beginning Nov I now have some more daily symptoms that I didn't have with my ones before and now noticed more left side symptoms. Thank god I have a second opinion neurologist apparently in Feb. When you talk about feeling low I can relate so much it wears you down especially when you feel your not being listened too or your symptoms taken seriously. I consider myself very resilient but have never felt so vulnerable but thank god for the support we have. Speak to you soon. Michelle.
Hi Michelle, it sounds very much like your body is compensating when you swing out your right leg. This does happen to me also in different ways. Fingers crossed your second opinion goes well in Feb. I’ve found the more my mobility worsens, so does our vulnerability and anxiety. But the same can be said also but the other way around when mobility improves. Certainly for me, as it has done a bit after having steroids in November. Regards Neil.
Just found your channel, thanks for sharing your journey. Starting treatment in January finally after 12 months of chasing. I can understand the emotion builds up at times as well as the frustration. Keep up the good work, J
Hey there, thanks for the message .. and you’re welcome. This last twelve months have been difficult and challenging for me especially now they’ve just re-diagnosed me, after being diagnosed with MS in 2013 (documented in latest videos). Have you just been diagnosed with MS then? I know for me when I was first diagnosed it took over a year also. All the best - Neil.
Oh guys. So sorry. Such a debilitating condition, MS, as you well know. I know it, too, and am in preparatory mode, since I'm also declining in very similar ways as you seem to be. How strange to me that I can relate so keenly with you on every level. You are being very courageous, to my mind. It's the not knowing EXACTLY what to expect that can be really really hard. Thank God you have each other!!! This is the main thing, you know. You have each other. A blessing that is. Have any more "Teresa's" around to come to the states? LOL, just kidding. She's one of a kind!!! Praise God for her, as I know you do. Keep going, Neil. And keep us posted.
@@murphymcsmooshface7004 One MRI with at least one brain lesion present and/or a spinal MRI with a least 2 lesions present....also symptom history will give a diagnosis. It can be tricky, though. For 15 YEARS, I thought I had Chronic Fatigue Syndrome!! I did LOTS of research. Best to you, Murphy.
Hello Elaine, and thank you for your lovely and kind words. No more Teresa's available I'm afraid :) I've got the very best one, and I consider myself to be the luckiest man in the world. You are correct, it IS the NOT KNOWING and I've been saying this for a very long time in my videos. For example, I'm a little better at the moment (video coming) but now I'm scared because I would love it to continue, but I'm terrified I'll now go backwards again. The NOT KNOWING! Blessings to you Elaine, sending loving thoughts from both Teresa and I.
Great to see the update! About time they intervened with the medications. It's okay to feel down about what is happening. Just make sure you keep talking to Teresa or us on here as it's important. Don't keep it in ❤ They're probably scares you may sue them for all the delays they gave you & how it has affected you. Teresa is right ... Try & be positive. Be kind to yourself ... Rest when you need to, etc. Love watching you two 💘 🐦 🐦
Hi Susannah, and thank you. We are super pleased you enjoy watching our channel, another video coming soon with some improvement - not to be missed. Take care.
Whew, Neil... Lots going on with you right now. Which is good - finally things are happening. But I also really do understand your anxiety and fatigue. I hope both the steroids and the Azathioprine will make a difference for you. Remember: when you´re going through hell, keep going (or ask super driver Teresa to push you). I look forward to your next update. Lots of good thoughts from me! By the way, I still watch every single video you put up, I just haven´t commented much these past few months. I am doing well though. No new relapses or anything, which I am thankful for every single day, since I am very aware, that none of us should take that for granted.
Hey Rikke, it's really great to hear from you :) And I'm so pleased to hear things are going really well for you, no relapses is definitely what I want to hear from you. Brilliant news. Yes, lots going on at the moment .. bit scared of any looming side effects but so far so good I think. The steroids are making my already fast working mind work at twice the speed of light now. I only got about five hours sleep (broken) last night due to Insomnia, but .. having said all that THEY ARE making me FEEL better. I haven't felt this well and upbeat for a very long time, in fact quite the opposite I've been getting very down and depressed because of my failing body. Since having the steroids though, I've picked up a bit with my mobility which has made me super pleased.. not much maybe only about 5 - 10%, but I'll take anything as you know. Thank you so much for your good thoughts, they are gratefully receive. Sending some right back there to you too Rikke. I'm really happy that you keep up with the videos, and that's absolutely fine you don't comment on every video, no expectations. I think you were one of my first hundred subscribers way back when .. lovely to still have you on-board. As for the super driver Teresa, she's been doing just that .. I'm rather behind with editing but there's more videos coming not to be missed. Sending very best wishes to you Rikke, and I really hope you continue on that upward health trend. Best - Neil.
God I hope the steroids help with your pain and mobility. I live in northern Minnesota and my MS really tends to flare up. Good to hear from both of you.. God bless.
Good to hear from you Matthews, and thank you .. The steroids does seems to be having a positive effect on me (video coming). I'm sorry to hear your MS seems to be really flaring up at the moment. I do tend to find the extreme cold or heat effect me.
Hey Lee, thanks. Oh and it’s already happening, I’m feeling a lot better and improving. I’m just behind on the videos. Yes agreed about the medicines. I hope all is well with you.
Yes i understand. Im sorry , i over reacted lol. I bet its been a crazyy tiring weekend for you both. This shockked all of us. I really wish doctors would do their jobs properly, you could have been helped earlier, thank heavens you got proper help now. Your ms nurse sounds wonderful xx. Thank you for quick reply. Take it easy now and go and pamper yourselves . Lots of love coming from wales🏴 🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡 see you later xx
Thank you so much Fredee, and not a problem at all. Teresa and I are so pleased that you're enjoying our videos and following our journey. Much love to you, take care of yourself now. xx
I am so glad you finally got a visit with your doctor! I hope they monitor you more closely now, and see you more often. It’s always great to see you Teresa smile ❤️❤️. Try not to think about the side effects, I just had my 4th infusion of Ocrevus this past Monday, and feel so weak, however, I try to manifest positive outcomes in my thoughts and know I will feel better soon. Much love and please do an update after your steroid infusions. Prayers and ❤️
Hello Andrea, lovely to hear from you. I do recall that you started Ocrevus but I didn't realise you'd already had four infusions. Wow!. Sorry to hear you're not feeling great on it though. I will of course keep you up-to-date, another video coming soon - not to be missed! Much love and prayers to you, from Teresa and I xx
@@NeilBradleyMS I feel a little sickly for a few weeks, then I feel great. It is resetting my immunity. I so look forward to see if you get some benefits from the steroids and your new medication. Love and prayers to both of you. P.S. it's cold in Michigan, with snow!! Hope you both are warm.
Andrea W Thanks Andrea, it’s chilly 🥶 here too in the UK. Yes we are keeping warm thanks, the central heating is on 24 / 7 at the moment. Hope you are too.
That is great news Neil I ma so pleased they got straight on with some treatment for you. I am hoping it is working for you. Take care and night night to both of you :D Teddy
Hope you get some great results. Why don’t the doctors believe us until they see it for themselves? Who knows better than the person experiencing the pain, stiffness, lack of balance m, etc!! Ugh, so maddening! Good night to both of you. It is 9:30 pm where I am at, which is past my bedtime... so tired of being tired!
Oh Neil, I really hope you see some improvement with the steroids. Theresa is right, you have to stay positive. Rest up when you can. Sending love to you both x
Thank you Carole, the steroids have started doing their thing and I've improved slightly. Video on it way, not to be missed! Much love to you from the both of us. xx
Prednisolone saved my life so many times, i am always pleased with outcome. I expect great things for you and look forward to seeing a wonderful change in your health. At one point i was on steroids for a whole year, so i know it has probably destroyed parts of bones and my heart and other organs. But if it improves, saves and extends your life, it is so worth it. I felt like superman when i felt the benefits, i was always amazed by my strength and shocked alot of friends and family, it makes us all laugh. Lol. Hurry up and get better , next week you will be like Geof Capes , who knows you might even enter strongest man of the year contest. 💪💪💪💪Love to you both and looking forward to hearing from you soon. 🧡🧡🧡🧡🥰🥰🥰
Hello Fredee, and thank you so much my friend. That's very interesting to know how you managed on Prednisolone as I've not yet spoken to anybody that has been taking it in the longer term like myself at the moment. I have to say I'm feeling quite good on it, but am slightly anxious when the time comes I have to stop. I realise we can't be on these Corticosteroid drugs for long though, as they're not really good for our bodies in the long term, and can do more damage than good. As you quite rightly say though Fredee, they certainly do improve our quality of life and makes us FEEL much better, and that has to be a good thing right? I'm working on the Geoff Capes bit, ha ha lol.. and I'll have to let you know on that one. Teresa and I had a good laugh when reading your message, really brought a smile so thank you for that. Much love to you - Neil & Teresa. xxx
Aww im so glad i made you both laugh...warms the cockles of my heart 🧡🧡🧡 yeah its also a blloming nuisance that it cant be prescribed for long term. Ive noticed they are becoming even more reluctant to let us have for long spells. Years ago,, i was allowed to have my own secret stash , so that if i felt i needed it ( i also have asthma as well as ms. ) but now , my gp are not letting me have this control due to new laws and safety concerns. Ive been taking it on and off for 35 years now. With out it, i would not be here. Last september was my last dose . Like you, its important to stick to the sdosage chart they give you. Its very strict and very important. You cant just stop taking them, it has to be tappered. ( you cant stop once you pop advert comes to mind ). However the benefits of steroids luckily lasts long after youve stopped. So even iif they give it to you twiice a year , it will have you smiling and flexing your musecles ( theresa will be thoroughly impressed and fluttering her eye lashes ) all year long. Glad to hear its working already and look forward to the new you xx🧡🧡🧡😁😁😁💪💪💪💪
I totally understand your frustration & low mood Neil but keep strong ! Wishing all the best with your treatment & don’t forget to take the stomach liners when you take the Oral steroids. I was prescribed 500 Mg Steroid daily dose (tablets) whilst having a relapse & the doctor forgot to prescribe stomach liners ! Now I truly know why people can think they are having a heart attack when it is acid reflux 😬 Take care 👍
Hello Gordon .. thank you. Don't worry, I've got my morning "tablet" routine which is a bit crazy at the moment. As soon as I get out of bed I take the Bone Protector. Then half an hour later I collect all the tablets together, 1 x stomach protector, 1 x Azathiprine, 8 x prednisolone AND I'm also on 4 x Antibiotics spread out through the day at the moment. I'm going to rattle!!! Sorry that you had to experience the stomach acid, sounds just horrible. Best wishes to you also Gordon.
Hi Fredee, no not at all so please don’t worry. I’ve just not had time to complete answering all the comments yet, including yours. This latest video has had a huge response and it takes me many hours to answer everybody. Haven’t quite reached you yet my friend. 💞
Hey Wade, it has been a little while hasn't it .. but so pleased you're still monitoring the channel and watching the videos. I'm starting to feel a bit better now, I'll take anything. Early days. How's you my friend?
@@NeilBradleyMS I've been doing great just taking things one day at a time and continuing to take tecfadera twice daily and have a MRI yearly to monitor progression but otherwise it seems to be working fairly well 😊
@@supertransformations9087 I'm really happy to hear this Wade .. ahh so you're on Tecidera are you, I've heard this is a very effective drug. They all do similar things by suppressing the immune system, but just target it in different ways. I wish you continued good health and improvement. Take care now - Neil.
Hey Neil, hope things are going well with your steroid infusions. I expect to see you up walking about as soon as they kick in a bit. You and Teresa deserve some good news as of late, and maybe this is it. The steroids will surely help alot, and I'll keep my fingers crossed that the Azathroprine (sp ) works wonders for you! Take care, both of you!
Thank you Rona, Teresa and I appreciate your kind thoughts. I have indeed (recently) been up and about, video on its way - not to be missed! The steroids seem to be doing their thing, but it's slow going and all the time I'm scared of going backwards now I've got a tiny bit more mobility. Yes, hopefully the Azathioprine will suppress my immune system enough to stop it damaging my body. Take care. x
I’m suffering with movement as well and it’s not fun is it ? I luv your expression ‘furniture walking’ I might have to pinch that off you ! Keep your chin up...
Thank you very much Paul, slowly but surely things are going in the right direction (I think). Starting to feel a tincy wincy bit better. I hope all is well with you too.
Hi Neil & Teresa, wow what a day you two had ! How have you been on the steroids , have you noticed any improvements yet , hows your blurry eye . I'm sure the steroids will work their magic and you'll start getting some positive improvements to your health. Its normal and human to be feeling low , were dealing with chronic debilitating illnesses that change the course of our lives. Things should start to improve now you're getting treatment at last !! Chin up , take one day at a time , take care & lots of love to you both, Grace 😊
Thank you Grace, Teresa and I really appreciate your kind words. I'm starting to feel a little bit better and I've gained a bit of mobility back (the blurry eye is still blurred though, think I've got that for life now) But I'm scared now (sounds crazy) because of going backwards again. It has been really hard to cope with my terribly LACK of mobility this last six+ months or so. There is a new video coming, not to be missed!! I hope all is as well as can be with you Grace, much love to you from both Teresa and I xx
Aww thanks Neil for your lovely reply 😊 I’m glad the steroids are kicking in. The body has an amazing ability to heal , so you never know in time your eye might get better.... never say never !!! I used to get Lhermittes syndrome for years , which is that weird electrical sensation you get when you bend your neck, and then suddenly I stopped noticing it and it’s been gone for ages (I didn’t do anything different in my life ). I don’t blame you for feeling scared about getting worse and the future , but remember you’re someone who’s not been on any medication at all , and you’ve been dumped by the medical profession (which is absolutely disgusting I’m my opinion). Teresa is right when she says stay hopeful, this new medication may work wonders for you , let’s hope it does, & if it doesn’t then I’m sure there’s other medication options out there for you to try. Stay strong, you’re a fighter , looking forward to your next video, Grace x
It's very discouraging to know how they didn't take your concerns and struggles seriously until now. (I've been there!) The high dosage of meds and steroids just shows how much you guys needed that medical support and treatment. I am in a bind myself, I've been stiff from a tingling that started from my second toe of my right foot that started spreading and invading my nerves. It has happened before but this time in a matter of days it captured my entire body. I've been in pain for 15 days now. I tried contacting my Neurologist but his secretary insisted that were overbooked and couldn't squeeze me in the list. I ended up going to the ER andI was admitted to the hospital. Sadly, I only stayed for 2 days more because the docs didn't know what to do with me. I'm concerned about the possibly of getting worse due to complications brought on by the meds, so I ask alot of questions and try to look for other options. The Hospital Neurologist and his colleague, the Internist agreed about my concerns but wanted to give me 1g of Solumedrol, and tried giving it to me twice via IV, but I noticed what the nurse was about to do, and strongly objected- twice. The Neurologist ended up wanting to discharge me because he said that the Solumedrol was the only med they could offer me. I insisted the dosage was too high and wanted to try another route. I was declined and later discharged. They insisted that since the MRIs didn't show new lessions, possibly they were old ones causing me all this neuropathy like attack and that they didn't have any treatment for that. I left disappointed and in pain. Walking is a struggle, so is writing (I have a poor grip) eating (digestion issues) and sleeping (the pain won't allow my body to relax) and my hands have this strange burning-itching painful sensory related feeling about them that comes in waves. If I scratch it burns more. Making it as painful as it is disheartening. I've also lost a significant amount of muscle and body mass, I look frail because well, I am. I did experience sudden relief on certain parts of my body but, then other parts started to feel worse. 🤷🏻♀️ But, thru all this, I have faith that God will continue to give me strength and His power will prevail. I also have a second opinion appointment to see another Neurologist next month. Please know we understand how hard this can be, and we will continue to pray and to support your channel. It is important that people know what it's like to be in your shoes. Who knows? Maybe someone watching can be an advocate bringing further awareness and hopefully new discoveries can arise and bring hope for all chronic illness patients. As always, sending you both a big hug 💗💖
Thank you my friend for telling us about your experience. I can understand your fear with regard to the the 1G of steroids. This is what I have, 1g every day for three days! It usually takes about ten days to kick in until I feel the benefits. The steroids suppress your immune system in the short term, and I know it’s scary but they do work and seem safe, I’ve suffered no ill effects as yet. It is difficult getting over the fear of drugs, I’m scared of the side effects as well but, I can tell you I am now doing much better. Another video coming soon. I hope you start to feel better soon.
Hopefully, you're noticing improvements already Neil? How do you get on with the steroid treatment? during my Optic neuritis flare last year I had steroid IV and then tablets to taper off with after but the steroid jitters were interesting and I had a facial rash for a few weeks. Its a shame you had to wait so long for treatment.
Hi Becky, thanks. I’m actually doing pretty good (video coming soon). It’s quite amazing. I’ve found the IV steroid treatment at hospital ok, not much of a problem. Starting the tablets (prednisolone) I had a few issues with blood pressure and had a funny turn, but that’s all settled down now. I actually look forward to taking them, can you believe that!!
Hi guys, I completely understand the past carrying on etc, its hard to stay positive all the time isn’t it? It’s just ugh, but hey ho god loves a trier as I like to say. Anyway, I’m really really glad your getting steroids and I’m hoping you can feel better. Neil, when you had your MRI scans in the past how long did it take for you to get your results back? Great vlog as always btw. Can’t wait for next one 😊💪
Neil, I think Teresa is a very beautiful lady and I'm glad u have her by your side. I also think you're very lucky. I hope you're both keeping well. Regards Patrick 💪💙🌻🎄🎁☃
My left leg is my strongest leg. My right leg is a useless bag of what was previously muscle fiber, but is now an effigy made in honor of spasticity and atrophy. The muscles in the back of my leg CAN move, but they choose not to do so of their own spiteful recourse. The muscles on the front of my leg work only to hold my leg straight with a power that its waifish frame must hide out of coy modesty, only to brandish again with reckless abandon. My leg laughs at me whilst my family has to carry me like Bernie.
So sorry to hear this.. my legs don’t sounds quite as bad as yours but know that I do understand where your coming from. Muscle can waste very quickly, especially when the wiring (nerves) aren’t delivering the correct information to them. Stay strong.
What medications are you on to help you walk ? I take baclofen for my back spasms and tightness and ampyra to help me with walking. Have they suggested and of them to help you walk or Botox for the colonies. Also they have me on ocrevus twice a year to slow the progression of the PPMS . I’m sorry things are so bad you have to house walk before all my meds I was doing like that using everything I could to get around. I’m on 17 pills a day but they do help for the most part. Don’t let the ms win don’t let it steal your smile be strong believe in you believe you can. Remember NEVER QUITE NEVER BACKDOWN BE THE WOLF🐺. Best of wishes to you.
Hey Thomas, nice to hear from you. I've tried Baclofen but it just turns my muscles into Jelly and really doesn't suit me. I've heard of Ampyra, I did a bit of research on it and I believe it makes some people walk better by helping the damaged nerves "talk" to each other a bit better. Unfortunately, it's rarely available on our National Health Service in the UK. I'm glad these meds are helping you however, and hopefully the Ocrevus is doing it's magic in slowing down the progression. Wow! 17 pills is a lot, I'm almost matching that at the moment lol, but only because I'm on 8 x Prednisolone and a few others. I've never been on so much medication. All the best to you, and I look forward to your next video also.
I’m sorry the baclofen doesn’t work for you. I know without it my legs would be twitching well I’m walking horribly. And my back would lock up a lot more then it is. I’ve never had so many meds either I feel a bit like my own pharmacy lol. Looking forward to the next video Best wishes hope everything works out for you.
Well hello you guys.👍I hope your staying positive ?Good result but a long time waiting .Your taking the steroid that I have an allergy too! It put me in the hospital.Im now on bisopralol to keep my heart rate from doing over time.I hope it's doing better for you?Ms is a real shit and can blow you down any time it wants but you don't give up Neil cos you a strong chap and got a strong wife.I was at hospital to see heamatologist about taking apixaban cos I had two pulmonary embolisms .I'm now on thinners for life but worry part is drug is new and no antidote yet in case it needs reversing.so that scared me! He reckons ms most likely cause of clots cos not so fast on feet these days.Also have to wear dog tag to say I have blood thinners but also have ms.I know dangers of clots but it's only when a doctor mentions death that it seemed to hit home just how shitty things are with health.Its depressing but as my dad would say.....You woke up this morning didn't you?😀so feel kind of ok with it all.I know how you feel tho Neil but I hope it's improving for you.?When we are all together talking about stuff it doesn't feel so bad and you don't feel alone on this life journey.Hello to Teresa and your a strong gel so well done to you too.god bless to you both and chin up Neil.👍👍xx
Bless you Sharon, thank you for your lovely message. Quite right!! When we all talk together about our troubles, it doesn't quite feel so bad does it and so I feel it's a very good therapy for us all. So, anytime you fancy a chat, you just let me know and we are here for you ok. As your Dad quite rightly says, yes we did wake up this morning .. but with the deepest of respect to him, actually getting out of bed and making a start to the day with an Auto-Immune disease can be quite difficult and challenging can't it Sharon. I'm sure you know where I'm coming from. MS can significantly hinder your movement, and yes consequently horrible things like clots can form in the legs and travel to other places causing more health issues. Even at my worst, I try my very best to just keep moving around a little bit. Even if you just get up once an hour and walk to the kitchen and back, at least you've got that bit of extra blood flow there reducing the chances of another clot. This is what I try and do. I find all the medication quite worrying Sharon, especially the side effects .. but I'm slowly learning we don't really have much of a choice whilst we're trapped in these faulty bodies. I've passed on your message to Teresa thank you, she does in fact read all the messages. Much love from the both of us. xx
Hi Michelle, I'm doing a bit better thank you for asking. The steroids seems to be doing their thing, well something is .. I'm taking that much medication at the moment it's hard to tell, but it has to be the steroids because it's the usual trend with me. New video coming soon, and you will see for yourself. Take care.
Hi guys , nice to see you again . Is a shame that for most of the doctors have to see us almost taking our last breath to say “ hey take this you need it “ , when you have been seeing it the whole time. It’s like they don’t believe ( regardless their medicine knowledge) that we know our bodies and we know when we need help; like you’ve been asking for so long. I’m not glad that you are not doing well, but I’m glad that get to see you like that otherwise they wouldn’t take such a hurry giving you the treatment that you’ve asking for. Hope this treatment helps you, so you can take a break. Teresa keep the good work , you’re great 👍. Sorry for my English is not my first language. See you next time. Cecilia from the Caribbean island 🌴 Puerto Rico 🇵🇷
Hello Cecilia, your English is just perfect and I thank you very much for your kind message. Yes, it's a shame I've had to wait so long for some treatment but there has been a lot of complications what with having to see a Professor for a 2nd opinion. Finally though, I got there in the end. Both Teresa and I read all the messages, so thank you again. Take Care.
So Neil I’m guessing your first infusion has happened. How did you go? Are you feeling a little better? How are you tolerating the oral prednisone ? Do you have Facebook? We can all talk in more real time? Andrea
Hello Andrea, apologies for the late response .. this video has had such a huge response I've slowly been going through the comments in chronological order. Yes, I've had the infusion now and I've gained a bit of mobility back, not much but I've just got slightly more balance in my back and my knees are working a touch better. I'm probably about 5 - 10% improved so far. I'm hoping for more, but on the same hand scared I'll go backwards. The Prednisolone seems to be keeping me upbeat and feeling good, I've got so much mental energy, but the only problem is I've also the got Insomnia at night. I think I only managed five hours last night, and that was broken sleep as well. Gave up, and got up at 6am this morning. I'm rather liking being on the oral steroids though, they really are making me "FEEL" better, and not so low. I do understand though that long term it's not sustainable. Yeah I have Facebook Andrea, I don't really use it much to post on but a lot of people from my channel like to contact me on there. I'm more than happy to add you (now that I know you quite well) .. if you search Facebook for "neil.bradley.37" I should pop up in search. Take care - Neil.
Hi Neil. I’m very pleased to read that you’re tolerating the infusion. That’s a huge plus. The orals too - fabulous. Do they expect that they’ll have a long term or any kind of reparative effect ? Or just a “while you take them?” outcome? Any word on a definitive dx ? OM, TM, MS ? I’m posing more questions- sorry bout that. You know by now I kind of thunderbird (ataxia) 😂 through daily life vicariously by you. It’s almost like holding up a mirror. Hi Teresa. How are you darling lady? If I DM you on Facebook can you send me a post office box or address to send you some Aussie goodies for Xmas?? Take care you two !!!💖🇦🇺Andrea.
@@murphymcsmooshface7004 Hey Andrea, whilst I'm taking the steroids I'm taking stomach and bones protector medication as well. I was actually diagnosed with TM (Transverse Myelitis) in 2007 but then it turned into an MS diagnosis in 2013. They now think it's NMOSD (neuromyelitis optica spectrum disorder) but Seronegative because all my tests come back clear. That's very kind of you Andrea, we don't have a PO Box, but don't mind sending you our address. Teresa is out with a friend at the moment, but she's doing ok (apart form the Athritis which cripples her) Take care now.
Wonderful. I’ll shoot off a DM shortly. I’m sorry to sound clueless re your dx I have committed your dx’s to memory but I thought and hoped they may have given you a more solid / broader idea.
Thank you Eliane. All I can say is, they are starting to do there stuff and I’m feeling better than I have done in months. Video will be coming, but I’m a bit behind.
Hi Neal and Theresa 😁🖐 I'm glad they are giving you the steroids again. I remember you walking around so good the last time you had been taking them. I went to the Dr on Wednesday and she told me. That I have a autoimmune disease and I have always been told I have fibromyalgia. So she did a lot of lab work. So I'm waiting to hear from the Dr. See where we go fm here. I have never been told that I had a autoimmune disease. So now to figure out which one it is. .. I know your stew will be delish 😁 you'll be fine Neal. I know your going to do a lot better 😁 have a great weekend 😁⚘😊⚘😁⚘😊⚘😁⚘
Wow! I can't believe that you seem to be getting all these procedures to help you. It's asthough thr medics have just realised how much help you really need. I'm so pleased for you after all this time.
I'm not al all surprised you've been so emotional, Neil. You have had months of nothing, and then without warning, it's all happening.
I think you and Teresa are wonderful, inspirational people. I'm sure off camera life can be hard for you both. But you stand by each other because you are a team, and that's what matters.
Thank you for the mention by the way..I also like it when you mention other subscribers and give their channels a plug. 😀👍
Thanks Dean, always appreciate your thoughts and the fact that you are in the process of through every video on our channel. 👍
dean200993 Hi there , hope you are ok. Xx
God ,I feel your pain and depression, I cry ever day, very emotional, you feel like your watching the world go bye and your stuck on the bench watching , I can't sit bye the window or outside cause I get so depressed, hope you get some relief friend
Bless you Chris, yes I know that picture you describe very well and I’m so very sorry you are suffering. Thank you for your kindness, and I do hope you start to feel better soon 💞
Chris Eisenbraun Hi there, so sorry to hear how depressed you get. Big hugs from me xx
"Furniture Walk"! Brilliant! I can't believe that it never occurred to me to call it that!
Good eh! It’s an expression I’ve been using for years, can’t remember if I made it up myself or I picked it up from somebody. 🤔
It is so sad that these things have to get to a certain point before the physicians will "jump" on things. I can so relate to so many of your ups and downs. Keep your hope up...Love to you both
Yes it is Tamara, there have been a lot of set backs because of the necessary 2nd opinion from the professor, then the dictations got lost for a month. Meanwhile I just get worse and worse. I can tell you though l, for the first time in MONTHS I’m doing better. Video will be coming soon. Much love to you from both Teresa and I. 💞
Thanks for sharing Teresa & Neil! I hope they get everything moving,it really does make a difference. Hugs and positive thoughts sent your way!!
Thank you Avril, all I can say is they are working. Today I’ve been amazed, another video coming soon. Much love to you from both Teresa and I. We hope you are well. 🙏
Hi Avril,best wishes sent in your direction darlin xx.
I't such a shame that you had to get that worse to get some attention! I've seen you very worried, and I totally understand you, taking such powerful meds is always worrying, but I believe that checking your blood so often would minimise any major side effect that may occur, so be strong and positive! I really hope you are doing better now, and I look forward to your next video. Thank you both for sharing, I want you to know that your videos help me a lot going through the disease. A big hug from Italy!
Thank you Sara, I’m super pleased to hear my videos help you a lot🙏 Yes I’m having weekly blood tests for six weeks to make sure the new immunosuppressant drug isn’t doing anything sinister. I am doing better, video coming (bear with me). Take care.
Sara Hi Sara, big hello to Italy, keep up the good work. Xx
I'm so glad someone is doing something to help you at last. They should be ashamed of leaving you hanging like they have! I am hoping for good news in your next video. Hugs to you both.
Hello J, and thank you for that. Yes, it's been a long time coming but finally I feel I'm getting the help I need. And it's working! I think you're going to be rather shocked at my next video. Be well.
Well done Team Bradley! So pleased you're finally being listened to Neil. The treatment sounds really hard and extremely exhausting but sometimes we just have to go for it and believe it will work; I really hope it does and the side effects are minimal. Thanks for sharing your journey as always
Thank you very much Bel, we really appreciate your kind words. Yes, the treatment isn’t easy and it’s quite scary as well. I’m doing ok so far (another video coming soon).
Neil Bradley I think Bel worded that perfectly, that’s exactly what I was going to say! Hope it’s going well Neil!
Georgina's Journey Thank you so much Georgina. Means a lot🙏
So glad you are getting treatment...finally! Can’t wait to see how you are doing. Hugs to you and Teresa!
Thank you Wanda, that's kind of you. I'm doing a bit better now, video coming soon so look out for it.. not to be missed :) Hugs to you also, from the both of us.
Wow !!!! Great news Neil. You look shattered/exhausted. I’ll be watching your progress with much interest. My mobility up the pole the past few days. Teresa, you’re a dream of a woman. Love to you both for the journey ahead. 💖⭐️💖🇦🇺 Andrea
Thank you Andrea, we really appreciate your support. Teresa sure is my rock, and I don't know how I would manage without her. The other day I brought her some flowers and a Thank You card to show how much I really do appreciate her. Much love to you too, from the both of us. xx
I can totally relate Neil, I’ve worsened in the last 12 months. I understand where you’re coming from and feel the upset, anger and frustration. See my neurologist December 11th, see what he says.
I can’t walk now, shake with ataxia, can’t hold a stick straight because I wobble and the spasm in my leg weakens me.
I’m following your journey closely, and hope all goes well x
Thank you so much Karen. I’m sorry things aren’t good for you at the moment, I truly am. Let’s hope your Neuro comes up with a good treatment strategy. Fingers crossed 🤞 for you. So pleased you’re enjoying our journey as much as we enjoy doing the videos for you. 💞
I hear you Karen. My legs, particularly the left, are so weak. Weird numb patches over my skull with tingly feelings and electric shock twinges all over my leg. Plus a thousand other weird symptoms. So tired. Stay well Karen.
Why do we have to deal with and struggle with so many symptoms. Always something new pops up. So tired of fighting everyday, and I find it difficult to be jolly all the time. Alas, we’re strong (we have to be!). My best wishes goes out to everyone dealing with this condition.
Oh Neil, I have so many words to say but don't know the words to say.I was diagnosed at 32 and everything was taken away from me. I am now 40and I know I've mentioned my symptoms to you in the past, but I completely empathize with everything that you are saying. It brought tears to my eyes to watch your video because I've been in your shoes. It is such a helpless and hopeless feeling. It's just downright scary. Keep fighting with everything you have. The fighting has kept me going even with one arm left.would you believe with one arm and the rest of my limbs paralyzed, I still live on my own? No caregiver, no assistance to get me into bed or on the toilet.I do have someone come every other day to just be there while I take a shower. and the only reason why I say this is because it's my fighting stubborn attitude that keeps me going. I sure hope this medication helps you. Medications like this or pretty scary because of potential side effects. Take care of yourself and keep away from his many germs as you can. It's hard during this time of year but your poor immune system is going to be shot.
Dear Friend, I think that your fighting stubborn attitude is absolutely the right way to be!! It is your shear determination and strength that keeps you FIGHTING and managing best you can despite your unimaginable challenges. I THINK YOU'RE AMAZING!! Managing all on your own, with paralysis and one good arm .. I'm taking my hat off to you right now!! I honestly don't know what I'd do without my Teresa, I'm so VERY lucky to have her. I've felt that helpless and hopeless feeling, on a very regular basis recently. Since having treatment a couple of weeks ago, not quite so much, as I've regained a little bit of mobility back.. not much just a little to improve how I feel (video is coming - not to be missed). Sending much love to you from both Teresa and myself. Please take care. xx
Hi guys - thanks for update and glad you’re about to start on some treatments. Wishing you all the best. Hi to Teresa you’re amazing!
Hi Nic, and thank you for that.. going in the right direction, slowly but surely I think.
Neill so many of us are praying for you!! You two have shown such tremendous strength and perseverance through all the difficulties. You are both such and inspiration 🥰
Thank you, that's so very kind of you to say .. Teresa and I feel so humbled to know that we inspire people such as. I hope this message finds you well, blessings to you.
I have taken the tablet form of methyl prednisone and they work the same as the iv. I just hate the fatigue and extreme swelling I get with the steroids. Here we have home service where they deliver the steroid iv packages and a nurse come out to insert the iv and do the first dose and then I hook up each day for 5 day. I watched that video and I am so hoping that they get you back to walking around to feed the birds and garden. Well probably not garden because it’s cold. Lol. Thank y’all for everything y’all do. The information is always so interesting!! Talk soon.
Hi Patty, that’s good they can do it from home for you, saves a lot of travelling like what we had to do. It was very tiring.
For me, the same strength tablet steroids didn’t have the same effect as the IV, in fact I didn’t notice any improvement.
New video scheduled for publishing tomorrow at 8pm UK time, covers the three days whilst I had the steroid treatment.
You are in my prayers Neil. I have faith one day you will be healed
Thank you Paul, appreciate it.. I really hope so. 👍
That’s amazing that they finally took notice to help you out. Having MS is such an emotional condition to have. Please try and stay positive Neil x
Thanks Tara, appreciate it .. It's been a tough 12 months for sure, but finally I think I'm getting somewhere and my mobility seems to be improving a little. x
Hi Neil and Teresa, well I am so glad Neil that you were finally given the treatment you need! I hope it has helped so far and that you two are feeling some relief from the difficult year you have shared. You look like soul mates to me, I would love to see a video of how you both met🥰
Hi LW, it's funny you should say that because Teresa and I have always felt we are soul mates. Ever since the day we met, we "clicked" .. best friends since we met in 1990, until eventually life brought us closer together and we married in 2014. Our relationship just grows stronger and stronger the more life throws at us, we've never argued or had a row. We agree to disagree sometimes, but that's it. We consider ourselves to be quite unique, and very very lucky to have found each other. Teresa actually read your comment to me the other day, and said that is a really good idea for a video. Our life has not been easy though, not just illness.. a very bumpy ride .. Best to you. x
Wishing you well!
Im not in quiet the same place, but I feel the despair, particularly with the inconsistency and horrendous waiting times, as I previously mentioned on another video, I got to a prominent large Hospital & my neurologist admitted his department is in REAL trouble .
Hope its going well, you have great support from your lovely wife, very fortunate as I'm sure you know 👍
Thank you .. a lot of my suffering could have quite easily been avoided if they'd given me IV Steroids when I continually kept saying to them I'm really bad, never been this bad etc etc. But they wouldn't budge until I'd been to see this professor for a 2nd opinion. Thank you, things are going fairly well at the moment, and I seem to be improving. Thank you also for the kind words about my wife, she amazing.. and I have so much love and respect for her. Literally couldn't do this journey without her. Very best to you.
Hello Neil from Canada. Thanks for sharing all that it's not easy. It must have been hard not to be upset about their reaction. Like you said you called many times, it's not fair. I actually had a hard time today too. I started havind really bad gait problem yesterday weakness in neck and legs. Im very retissent to go ER because they dont care. They always tell me there is nothing wrong and to find hobbies. So, today it was going worst. I went to the clinic walking very slow with a stick trying to swing my legs without falling. When the Dr examined me he couldnt believe I had been that bad few times in the past year witout treatment. It quickly went worse while I was waiting there. I couldnt lift my arms and hold my head. He gave me 50mg prednisone. He even called me at home to tell me my blood test where good. Ive never had a dr caring and listening and not doubting what Im saying before. Like you I might start to have a little bit of hope again. I hope the presciption of 25mg/D is gonna be enough. I just want you to know you are not alone because I feel extremely alone with no support at all and I dont wish that for anybody. Its the worst thing. The Dr told me depression is a side effect, be careful, take care. Teresa you are amazing I hope one day I will have a caring person like you at my side.
Hello !! :) I'm sorry to hear you're having gait and weakness in your neck and legs, this really can't be easy to deal with. Hopefully, this will be just a small set back and a temporary thing. I understand you not wanting to visit the ER, how patronising them telling you to go and find some hobbies (shakes head).
Reading on through your message however, I am THRILLED you have finally seemed to have found a Doctor that CARES.. super pleased for you, and like you say it really does give you a little bit of hope doesn't it. And sometimes, HOPE is all we've got isn't it.
It's hard feeling so alone, and I'm so terribly sorry to hear you feel like this. At least you know there is a nice community here to chat to if ever your feeling down.
Take care - Neil & Teresa xx
Oh I'm so pleased for you Neil.
I get the low mood and not being able to do as much.
The not being able to walk for me also is so frustrating and upsetting.
I think I can do it and I bloody well can't.
That's my theory take what your given.
Good luck hun hope you soon start to feel a bit better.
Love ti you both
Hello Michelle, and thank you. It's the same for me, and it's a terrible blow isn't it .. being mobile for 40 odd years and then all of a sudden can't walk or do the simplest of tasks. It really does cause the low mood and depression, for me I find talking to people such as yourself, and many others on my channel a real therapy though. Much love to you.
Omg this back pain strange type symptom has been a recent new one for me that made walking very difficult for me. It was in my left side and my right leg was swinging out to enable me to walk. Most of my symptoms were predominantly in my right side but since what I feel was an intense episode during end of Sept/Oct beginning Nov I now have some more daily symptoms that I didn't have with my ones before and now noticed more left side symptoms. Thank god I have a second opinion neurologist apparently in Feb. When you talk about feeling low I can relate so much it wears you down especially when you feel your not being listened too or your symptoms taken seriously. I consider myself very resilient but have never felt so vulnerable but thank god for the support we have. Speak to you soon. Michelle.
Hi Michelle, it sounds very much like your body is compensating when you swing out your right leg. This does happen to me also in different ways. Fingers crossed your second opinion goes well in Feb.
I’ve found the more my mobility worsens, so does our vulnerability and anxiety. But the same can be said also but the other way around when mobility improves. Certainly for me, as it has done a bit after having steroids in November. Regards Neil.
Just found your channel, thanks for sharing your journey. Starting treatment in January finally after 12 months of chasing. I can understand the emotion builds up at times as well as the frustration. Keep up the good work, J
Hey there, thanks for the message .. and you’re welcome. This last twelve months have been difficult and challenging for me especially now they’ve just re-diagnosed me, after being diagnosed with MS in 2013 (documented in latest videos).
Have you just been diagnosed with MS then? I know for me when I was first diagnosed it took over a year also.
All the best - Neil.
Oh guys. So sorry. Such a debilitating condition, MS, as you well know. I know it, too, and am in preparatory mode, since I'm also declining in very similar ways as you seem to be. How strange to me that I can relate so keenly with you on every level. You are being very courageous, to my mind. It's the not knowing EXACTLY what to expect that can be really really hard. Thank God you have each other!!! This is the main thing, you know. You have each other. A blessing that is. Have any more "Teresa's" around to come to the states? LOL, just kidding. She's one of a kind!!! Praise God for her, as I know you do. Keep going, Neil. And keep us posted.
Elaine Reid oh Elaine I’d give my soul for a definitive diagnosis
@@murphymcsmooshface7004 One MRI with at least one brain lesion present and/or a spinal MRI with a least 2 lesions present....also symptom history will give a diagnosis. It can be tricky, though. For 15 YEARS, I thought I had Chronic Fatigue Syndrome!! I did LOTS of research. Best to you, Murphy.
Hello Elaine, and thank you for your lovely and kind words. No more Teresa's available I'm afraid :) I've got the very best one, and I consider myself to be the luckiest man in the world. You are correct, it IS the NOT KNOWING and I've been saying this for a very long time in my videos. For example, I'm a little better at the moment (video coming) but now I'm scared because I would love it to continue, but I'm terrified I'll now go backwards again. The NOT KNOWING! Blessings to you Elaine, sending loving thoughts from both Teresa and I.
Great to see the update! About time they intervened with the medications.
It's okay to feel down about what is happening. Just make sure you keep talking to Teresa or us on here as it's important. Don't keep it in ❤
They're probably scares you may sue them for all the delays they gave you & how it has affected you.
Teresa is right ... Try & be positive.
Be kind to yourself ... Rest when you need to, etc.
Love watching you two 💘 🐦 🐦
Hi Susannah, and thank you. We are super pleased you enjoy watching our channel, another video coming soon with some improvement - not to be missed. Take care.
Whew, Neil... Lots going on with you right now. Which is good - finally things are happening. But I also really do understand your anxiety and fatigue. I hope both the steroids and the Azathioprine will make a difference for you. Remember: when you´re going through hell, keep going (or ask super driver Teresa to push you).
I look forward to your next update.
Lots of good thoughts from me!
By the way, I still watch every single video you put up, I just haven´t commented much these past few months. I am doing well though. No new relapses or anything, which I am thankful for every single day, since I am very aware, that none of us should take that for granted.
Hey Rikke, it's really great to hear from you :) And I'm so pleased to hear things are going really well for you, no relapses is definitely what I want to hear from you. Brilliant news.
Yes, lots going on at the moment .. bit scared of any looming side effects but so far so good I think. The steroids are making my already fast working mind work at twice the speed of light now. I only got about five hours sleep (broken) last night due to Insomnia, but .. having said all that THEY ARE making me FEEL better. I haven't felt this well and upbeat for a very long time, in fact quite the opposite I've been getting very down and depressed because of my failing body. Since having the steroids though, I've picked up a bit with my mobility which has made me super pleased.. not much maybe only about 5 - 10%, but I'll take anything as you know.
Thank you so much for your good thoughts, they are gratefully receive. Sending some right back there to you too Rikke.
I'm really happy that you keep up with the videos, and that's absolutely fine you don't comment on every video, no expectations. I think you were one of my first hundred subscribers way back when .. lovely to still have you on-board.
As for the super driver Teresa, she's been doing just that .. I'm rather behind with editing but there's more videos coming not to be missed.
Sending very best wishes to you Rikke, and I really hope you continue on that upward health trend.
Best - Neil.
God I hope the steroids help with your pain and mobility. I live in northern Minnesota and my MS really tends to flare up. Good to hear from both of you.. God bless.
Good to hear from you Matthews, and thank you .. The steroids does seems to be having a positive effect on me (video coming). I'm sorry to hear your MS seems to be really flaring up at the moment. I do tend to find the extreme cold or heat effect me.
Medicines can be GOOD🤗 and bad, but that's not where we're going. Looking forward to you feeling better AND walking!
Hey Lee, thanks. Oh and it’s already happening, I’m feeling a lot better and improving. I’m just behind on the videos. Yes agreed about the medicines. I hope all is well with you.
My prayers are with you!❤️
Thank you Rosemary. 💞
Yes i understand. Im sorry , i over reacted lol. I bet its been a crazyy tiring weekend for you both. This shockked all of us. I really wish doctors would do their jobs properly, you could have been helped earlier, thank heavens you got proper help now. Your ms nurse sounds wonderful xx. Thank you for quick reply. Take it easy now and go and pamper yourselves . Lots of love coming from wales🏴 🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡 see you later xx
Thank you so much Fredee, and not a problem at all. Teresa and I are so pleased that you're enjoying our videos and following our journey. Much love to you, take care of yourself now. xx
I am so glad you finally got a visit with your doctor! I hope they monitor you more closely now, and see you more often. It’s always great to see you Teresa smile ❤️❤️. Try not to think about the side effects, I just had my 4th infusion of Ocrevus this past Monday, and feel so weak, however, I try to manifest positive outcomes in my thoughts and know I will feel better soon. Much love and please do an update after your steroid infusions. Prayers and ❤️
Hello Andrea, lovely to hear from you. I do recall that you started Ocrevus but I didn't realise you'd already had four infusions. Wow!. Sorry to hear you're not feeling great on it though. I will of course keep you up-to-date, another video coming soon - not to be missed! Much love and prayers to you, from Teresa and I xx
@@NeilBradleyMS I feel a little sickly for a few weeks, then I feel great. It is resetting my immunity. I so look forward to see if you get some benefits from the steroids and your new medication. Love and prayers to both of you. P.S. it's cold in Michigan, with snow!! Hope you both are warm.
Andrea W Thanks Andrea, it’s chilly 🥶 here too in the UK. Yes we are keeping warm thanks, the central heating is on 24 / 7 at the moment. Hope you are too.
That is great news Neil I ma so pleased they got straight on with some treatment for you. I am hoping it is working for you. Take care and night night to both of you :D Teddy
Thank you Teddy, I’ve improved a tiny bit. Baby steps. Good night my friend. 😴
I am pleased I will keep my fingers crossed for you. Like they say Rome was not built in a day !
Good luck 🤞🙏
Thank you Jaime. 🙏
Understood on anxiety grief and outright fear!
Yes indeed Tom, it’s very real isn’t it.
Hope you get some great results. Why don’t the doctors believe us until they see it for themselves? Who knows better than the person experiencing the pain, stiffness, lack of balance m, etc!! Ugh, so maddening! Good night to both of you. It is 9:30 pm where I am at, which is past my bedtime... so tired of being tired!
I know that feeling Cynthia, so tired of being tired! I hear you. Thank you for your kind words, and I hope you had a good nights sleep.
Oh Neil, I really hope you see some improvement with the steroids. Theresa is right, you have to stay positive. Rest up when you can. Sending love to you both x
Thank you Carole, the steroids have started doing their thing and I've improved slightly. Video on it way, not to be missed! Much love to you from the both of us. xx
Hope you feel better soon 🥰 💪 sending you both hugs n love 💕🌹
Thank you so much, much love to you from the both of us 💞
Prednisolone saved my life so many times, i am always pleased with outcome. I expect great things for you and look forward to seeing a wonderful change in your health. At one point i was on steroids for a whole year, so i know it has probably destroyed parts of bones and my heart and other organs. But if it improves, saves and extends your life, it is so worth it. I felt like superman when i felt the benefits, i was always amazed by my strength and shocked alot of friends and family, it makes us all laugh. Lol. Hurry up and get better , next week you will be like Geof Capes , who knows you might even enter strongest man of the year contest. 💪💪💪💪Love to you both and looking forward to hearing from you soon. 🧡🧡🧡🧡🥰🥰🥰
Hello Fredee, and thank you so much my friend. That's very interesting to know how you managed on Prednisolone as I've not yet spoken to anybody that has been taking it in the longer term like myself at the moment. I have to say I'm feeling quite good on it, but am slightly anxious when the time comes I have to stop. I realise we can't be on these Corticosteroid drugs for long though, as they're not really good for our bodies in the long term, and can do more damage than good. As you quite rightly say though Fredee, they certainly do improve our quality of life and makes us FEEL much better, and that has to be a good thing right? I'm working on the Geoff Capes bit, ha ha lol.. and I'll have to let you know on that one. Teresa and I had a good laugh when reading your message, really brought a smile so thank you for that. Much love to you - Neil & Teresa. xxx
Aww im so glad i made you both laugh...warms the cockles of my heart 🧡🧡🧡 yeah its also a blloming nuisance that it cant be prescribed for long term. Ive noticed they are becoming even more reluctant to let us have for long spells. Years ago,, i was allowed to have my own secret stash , so that if i felt i needed it ( i also have asthma as well as ms. ) but now , my gp are not letting me have this control due to new laws and safety concerns. Ive been taking it on and off for 35 years now. With out it, i would not be here. Last september was my last dose . Like you, its important to stick to the sdosage chart they give you. Its very strict and very important. You cant just stop taking them, it has to be tappered. ( you cant stop once you pop advert comes to mind ). However the benefits of steroids luckily lasts long after youve stopped. So even iif they give it to you twiice a year , it will have you smiling and flexing your musecles ( theresa will be thoroughly impressed and fluttering her eye lashes ) all year long. Glad to hear its working already and look forward to the new you xx🧡🧡🧡😁😁😁💪💪💪💪
I totally understand your frustration & low mood Neil but keep strong ! Wishing all the best with your treatment & don’t forget to take the stomach liners when you take the Oral steroids.
I was prescribed 500 Mg Steroid daily dose (tablets) whilst having a relapse & the doctor forgot to prescribe stomach liners ! Now I truly know why people can think they are having a heart attack when it is acid reflux 😬
Take care 👍
Hello Gordon .. thank you. Don't worry, I've got my morning "tablet" routine which is a bit crazy at the moment. As soon as I get out of bed I take the Bone Protector. Then half an hour later I collect all the tablets together, 1 x stomach protector, 1 x Azathiprine, 8 x prednisolone AND I'm also on 4 x Antibiotics spread out through the day at the moment. I'm going to rattle!!! Sorry that you had to experience the stomach acid, sounds just horrible. Best wishes to you also Gordon.
Neil Bradley Thanks Neil, All of a sudden we turn into elderly parent types with the tablet rituals 😂 all the best and keep up the fight 😎
Hope i didnt upset you, if i did im sorry 🧡🧡 still looking to seeeing you here again xx
Hi Fredee, no not at all so please don’t worry. I’ve just not had time to complete answering all the comments yet, including yours. This latest video has had a huge response and it takes me many hours to answer everybody. Haven’t quite reached you yet my friend. 💞
Hi Neil it's been forever it's Wade hopefully this new course will help you in nothing but positive ways 🙏 that this course of action works
Hey Wade, it has been a little while hasn't it .. but so pleased you're still monitoring the channel and watching the videos. I'm starting to feel a bit better now, I'll take anything. Early days. How's you my friend?
@@NeilBradleyMS I've been doing great just taking things one day at a time and continuing to take tecfadera twice daily and have a MRI yearly to monitor progression but otherwise it seems to be working fairly well 😊
@@supertransformations9087 I'm really happy to hear this Wade .. ahh so you're on Tecidera are you, I've heard this is a very effective drug. They all do similar things by suppressing the immune system, but just target it in different ways. I wish you continued good health and improvement. Take care now - Neil.
Hey Neil, hope things are going well with your steroid infusions. I expect to see you up walking about as soon as they kick in a bit. You and Teresa deserve some good news as of late, and maybe this is it. The steroids will surely help alot, and I'll keep my fingers crossed that the Azathroprine (sp ) works wonders for you! Take care, both of you!
Thank you Rona, Teresa and I appreciate your kind thoughts. I have indeed (recently) been up and about, video on its way - not to be missed! The steroids seem to be doing their thing, but it's slow going and all the time I'm scared of going backwards now I've got a tiny bit more mobility. Yes, hopefully the Azathioprine will suppress my immune system enough to stop it damaging my body. Take care. x
God bless you guys
Thank you Dee, blessings to you 🙏
Wishing well always be able too walk well again well
I’m suffering with movement as well and it’s not fun is it ?
I luv your expression ‘furniture walking’ I might have to pinch that off you !
Keep your chin up...
No fun at all Bill.. yes I’ve used the “furniture walking” for quite a while now. 😊 You too.
Hi Bill, keep up with the furniture walk😘 xx
Hi Neil, hopefully the medication will pick you up mentally and physically.
Thank you very much Paul, slowly but surely things are going in the right direction (I think). Starting to feel a tincy wincy bit better. I hope all is well with you too.
Hi Neil & Teresa, wow what a day you two had ! How have you been on the steroids , have you noticed any improvements yet , hows your blurry eye . I'm sure the steroids will work their magic and you'll start getting some positive improvements to your health.
Its normal and human to be feeling low , were dealing with chronic debilitating illnesses that change the course of our lives. Things should start to improve now you're getting treatment at last !! Chin up , take one day at a time , take care & lots of love to you both, Grace 😊
Thank you Grace, Teresa and I really appreciate your kind words. I'm starting to feel a little bit better and I've gained a bit of mobility back (the blurry eye is still blurred though, think I've got that for life now) But I'm scared now (sounds crazy) because of going backwards again. It has been really hard to cope with my terribly LACK of mobility this last six+ months or so. There is a new video coming, not to be missed!! I hope all is as well as can be with you Grace, much love to you from both Teresa and I xx
Aww thanks Neil for your lovely reply 😊 I’m glad the steroids are kicking in. The body has an amazing ability to heal , so you never know in time your eye might get better.... never say never !!! I used to get Lhermittes syndrome for years , which is that weird electrical sensation you get when you bend your neck, and then suddenly I stopped noticing it and it’s been gone for ages (I didn’t do anything different in my life ).
I don’t blame you for feeling scared about getting worse and the future , but remember you’re someone who’s not been on any medication at all , and you’ve been dumped by the medical profession (which is absolutely disgusting I’m my opinion).
Teresa is right when she says stay hopeful, this new medication may work wonders for you , let’s hope it does, & if it doesn’t then I’m sure there’s other medication options out there for you to try. Stay strong, you’re a fighter , looking forward to your next video, Grace x
It's very discouraging to know how they didn't take your concerns and struggles seriously until now. (I've been there!) The high dosage of meds and steroids just shows how much you guys needed that medical support and treatment.
I am in a bind myself, I've been stiff from a tingling that started from my second toe of my right foot that started spreading and invading my nerves. It has happened before but this time in a matter of days it captured my entire body. I've been in pain for 15 days now. I tried contacting my Neurologist but his secretary insisted that were overbooked and couldn't squeeze me in the list. I ended up going to the ER andI was admitted to the hospital. Sadly, I only stayed for 2 days more because the docs didn't know what to do with me. I'm concerned about the possibly of getting worse due to complications brought on by the meds, so I ask alot of questions and try to look for other options. The Hospital Neurologist and his colleague, the Internist agreed about my concerns but wanted to give me 1g of Solumedrol, and tried giving it to me twice via IV, but I noticed what the nurse was about to do, and strongly objected- twice. The Neurologist ended up wanting to discharge me because he said that the Solumedrol was the only med they could offer me. I insisted the dosage was too high and wanted to try another route. I was declined and later discharged. They insisted that since the MRIs didn't show new lessions, possibly they were old ones causing me all this neuropathy like attack and that they didn't have any treatment for that. I left disappointed and in pain. Walking is a struggle, so is writing (I have a poor grip) eating (digestion issues) and sleeping (the pain won't allow my body to relax) and my hands have this strange burning-itching painful sensory related feeling about them that comes in waves. If I scratch it burns more. Making it as painful as it is disheartening. I've also lost a significant amount of muscle and body mass, I look frail because well, I am.
I did experience sudden relief on certain parts of my body but, then other parts started to feel worse. 🤷🏻♀️
But, thru all this, I have faith that God will continue to give me strength and His power will prevail. I also have a second opinion appointment to see another Neurologist next month.
Please know we understand how hard this can be, and we will continue to pray and to support your channel.
It is important that people know what it's like to be in your shoes. Who knows? Maybe someone watching can be an advocate bringing further awareness and hopefully new discoveries can arise and bring hope for all chronic illness patients.
As always, sending you both a big hug 💗💖
Thank you my friend for telling us about your experience. I can understand your fear with regard to the the 1G of steroids. This is what I have, 1g every day for three days! It usually takes about ten days to kick in until I feel the benefits. The steroids suppress your immune system in the short term, and I know it’s scary but they do work and seem safe, I’ve suffered no ill effects as yet. It is difficult getting over the fear of drugs, I’m scared of the side effects as well but, I can tell you I am now doing much better. Another video coming soon. I hope you start to feel better soon.
@@NeilBradleyMS Thank you. Because of your experience I am reconsidering and will discuss this further with my doctors.
That’s awesome! You can do this. 💪
Agree on your thoughts about depression. I always say I dont live life I exist. : /
Hello Indie, those are words I've used myself many many times. I hear you my friend x Blessing to you.
Hopefully, you're noticing improvements already Neil? How do you get on with the steroid treatment? during my Optic neuritis flare last year I had steroid IV and then tablets to taper off with after but the steroid jitters were interesting and I had a facial rash for a few weeks. Its a shame you had to wait so long for treatment.
Hi Becky, thanks. I’m actually doing pretty good (video coming soon). It’s quite amazing. I’ve found the IV steroid treatment at hospital ok, not much of a problem. Starting the tablets (prednisolone) I had a few issues with blood pressure and had a funny turn, but that’s all settled down now. I actually look forward to taking them, can you believe that!!
Hiya Becky💕
becky Barnes Hi there, hope you are keeping your chin up.xx
Hi guys, I completely understand the past carrying on etc, its hard to stay positive all the time isn’t it? It’s just ugh, but hey ho god loves a trier as I like to say. Anyway, I’m really really glad your getting steroids and I’m hoping you can feel better. Neil, when you had your MRI scans in the past how long did it take for you to get your results back? Great vlog as always btw. Can’t wait for next one 😊💪
Thanks Adele, usually the results come back fairly quickly within a couple of weeks by letter, sometimes longer.
Neil, I think Teresa is a very beautiful lady and I'm glad u have her by your side. I also think you're very lucky.
I hope you're both keeping well.
Regards Patrick 💪💙🌻🎄🎁☃
Thank you Patrick, that's very kind of you to say so.
My left leg is my strongest leg.
My right leg is a useless bag of what was previously muscle fiber, but is now an effigy made in honor of spasticity and atrophy. The muscles in the back of my leg CAN move, but they choose not to do so of their own spiteful recourse. The muscles on the front of my leg work only to hold my leg straight with a power that its waifish frame must hide out of coy modesty, only to brandish again with reckless abandon. My leg laughs at me whilst my family has to carry me like Bernie.
So sorry to hear this.. my legs don’t sounds quite as bad as yours but know that I do understand where your coming from. Muscle can waste very quickly, especially when the wiring (nerves) aren’t delivering the correct information to them. Stay strong.
What medications are you on to help you walk ? I take baclofen for my back spasms and tightness and ampyra to help me with walking. Have they suggested and of them to help you walk or Botox for the colonies. Also they have me on ocrevus twice a year to slow the progression of the PPMS . I’m sorry things are so bad you have to house walk before all my meds I was doing like that using everything I could to get around. I’m on 17 pills a day but they do help for the most part. Don’t let the ms win don’t let it steal your smile be strong believe in you believe you can. Remember NEVER QUITE NEVER BACKDOWN BE THE WOLF🐺. Best of wishes to you.
Hey Thomas, nice to hear from you. I've tried Baclofen but it just turns my muscles into Jelly and really doesn't suit me. I've heard of Ampyra, I did a bit of research on it and I believe it makes some people walk better by helping the damaged nerves "talk" to each other a bit better. Unfortunately, it's rarely available on our National Health Service in the UK. I'm glad these meds are helping you however, and hopefully the Ocrevus is doing it's magic in slowing down the progression. Wow! 17 pills is a lot, I'm almost matching that at the moment lol, but only because I'm on 8 x Prednisolone and a few others. I've never been on so much medication. All the best to you, and I look forward to your next video also.
I’m sorry the baclofen doesn’t work for you. I know without it my legs would be twitching well I’m walking horribly. And my back would lock up a lot more then it is. I’ve never had so many meds either I feel a bit like my own pharmacy lol. Looking forward to the next video Best wishes hope everything works out for you.
Well hello you guys.👍I hope your staying positive ?Good result but a long time waiting .Your taking the steroid that I have an allergy too! It put me in the hospital.Im now on bisopralol to keep my heart rate from doing over time.I hope it's doing better for you?Ms is a real shit and can blow you down any time it wants but you don't give up Neil cos you a strong chap and got a strong wife.I was at hospital to see heamatologist about taking apixaban cos I had two pulmonary embolisms .I'm now on thinners for life but worry part is drug is new and no antidote yet in case it needs reversing.so that scared me! He reckons ms most likely cause of clots cos not so fast on feet these days.Also have to wear dog tag to say I have blood thinners but also have ms.I know dangers of clots but it's only when a doctor mentions death that it seemed to hit home just how shitty things are with health.Its depressing but as my dad would say.....You woke up this morning didn't you?😀so feel kind of ok with it all.I know how you feel tho Neil but I hope it's improving for you.?When we are all together talking about stuff it doesn't feel so bad and you don't feel alone on this life journey.Hello to Teresa and your a strong gel so well done to you too.god bless to you both and chin up Neil.👍👍xx
Bless you Sharon, thank you for your lovely message. Quite right!! When we all talk together about our troubles, it doesn't quite feel so bad does it and so I feel it's a very good therapy for us all. So, anytime you fancy a chat, you just let me know and we are here for you ok.
As your Dad quite rightly says, yes we did wake up this morning .. but with the deepest of respect to him, actually getting out of bed and making a start to the day with an Auto-Immune disease can be quite difficult and challenging can't it Sharon. I'm sure you know where I'm coming from.
MS can significantly hinder your movement, and yes consequently horrible things like clots can form in the legs and travel to other places causing more health issues. Even at my worst, I try my very best to just keep moving around a little bit. Even if you just get up once an hour and walk to the kitchen and back, at least you've got that bit of extra blood flow there reducing the chances of another clot. This is what I try and do.
I find all the medication quite worrying Sharon, especially the side effects .. but I'm slowly learning we don't really have much of a choice whilst we're trapped in these faulty bodies.
I've passed on your message to Teresa thank you, she does in fact read all the messages. Much love from the both of us. xx
How are you doing now?
Hi Michelle, I'm doing a bit better thank you for asking. The steroids seems to be doing their thing, well something is .. I'm taking that much medication at the moment it's hard to tell, but it has to be the steroids because it's the usual trend with me. New video coming soon, and you will see for yourself. Take care.
Hi guys , nice to see you again . Is a shame that for most of the doctors have to see us almost taking our last breath to say “ hey take this you need it “ , when you have been seeing it the whole time. It’s like they don’t believe ( regardless their medicine knowledge) that we know our bodies and we know when we need help; like you’ve been asking for so long. I’m not glad that you are not doing well, but I’m glad that get to see you like that otherwise they wouldn’t take such a hurry giving you the treatment that you’ve asking for. Hope this treatment helps you, so you can take a break. Teresa keep the good work , you’re great 👍. Sorry for my English is not my first language. See you next time. Cecilia from the Caribbean island 🌴 Puerto Rico 🇵🇷
Hello Cecilia, your English is just perfect and I thank you very much for your kind message. Yes, it's a shame I've had to wait so long for some treatment but there has been a lot of complications what with having to see a Professor for a 2nd opinion. Finally though, I got there in the end. Both Teresa and I read all the messages, so thank you again. Take Care.
So Neil I’m guessing your first infusion has happened. How did you go? Are you feeling a little better? How are you tolerating the oral prednisone ? Do you have Facebook? We can all talk in more real time? Andrea
Hello Andrea, apologies for the late response .. this video has had such a huge response I've slowly been going through the comments in chronological order.
Yes, I've had the infusion now and I've gained a bit of mobility back, not much but I've just got slightly more balance in my back and my knees are working a touch better. I'm probably about 5 - 10% improved so far. I'm hoping for more, but on the same hand scared I'll go backwards.
The Prednisolone seems to be keeping me upbeat and feeling good, I've got so much mental energy, but the only problem is I've also the got Insomnia at night. I think I only managed five hours last night, and that was broken sleep as well. Gave up, and got up at 6am this morning. I'm rather liking being on the oral steroids though, they really are making me "FEEL" better, and not so low. I do understand though that long term it's not sustainable.
Yeah I have Facebook Andrea, I don't really use it much to post on but a lot of people from my channel like to contact me on there. I'm more than happy to add you (now that I know you quite well) .. if you search Facebook for "neil.bradley.37" I should pop up in search.
Take care - Neil.
Hi Neil. I’m very pleased to read that you’re tolerating the infusion. That’s a huge plus. The orals too - fabulous. Do they expect that they’ll have a long term or any kind of reparative effect ? Or just a “while you take them?” outcome? Any word on a definitive dx ? OM, TM, MS ? I’m posing more questions- sorry bout that. You know by now I kind of thunderbird (ataxia) 😂 through daily life vicariously by you. It’s almost like holding up a mirror. Hi Teresa. How are you darling lady? If I DM you on Facebook can you send me a post office box or address to send you some Aussie goodies for Xmas?? Take care you two !!!💖🇦🇺Andrea.
@@murphymcsmooshface7004 Hey Andrea, whilst I'm taking the steroids I'm taking stomach and bones protector medication as well. I was actually diagnosed with TM (Transverse Myelitis) in 2007 but then it turned into an MS diagnosis in 2013. They now think it's NMOSD (neuromyelitis optica spectrum disorder) but Seronegative because all my tests come back clear. That's very kind of you Andrea, we don't have a PO Box, but don't mind sending you our address. Teresa is out with a friend at the moment, but she's doing ok (apart form the Athritis which cripples her) Take care now.
Wonderful. I’ll shoot off a DM shortly. I’m sorry to sound clueless re your dx I have committed your dx’s to memory but I thought and hoped they may have given you a more solid / broader idea.
Hope the steroids bring much improvement.
Thank you Eliane. All I can say is, they are starting to do there stuff and I’m feeling better than I have done in months. Video will be coming, but I’m a bit behind.
great news
Your wife is lovely.
MaryLynn Thank you, she the best!
Hi Neal and Theresa 😁🖐 I'm glad they are giving you the steroids again. I remember you walking around so good the last time you had been taking them. I went to the Dr on Wednesday and she told me. That I have a autoimmune disease and I have always been told I have fibromyalgia. So she did a lot of lab work. So I'm waiting to hear from the Dr. See where we go fm here. I have never been told that I had a autoimmune disease. So now to figure out which one it is. .. I know your stew will be delish 😁 you'll be fine Neal. I know your going to do a lot better 😁 have a great weekend 😁⚘😊⚘😁⚘😊⚘😁⚘
Thank you so much Cheri, means a lot to us. It will be very interesting to know your diagnosis, please keep us posted. Much love. 💞
@@NeilBradleyMS your welcome 😁 I for sure will let you know when I hear something and thank you 😊
I hope the steroids give you the relief they did before!!!!!!!! It is possible.
Thanks Tom, they are starting to make a difference. (Video coming).