Consultant Visit, Methylprednisolone (steroids) by IV x 3 Days, MS, Neuromyelitis Optica (NMO)
ฝัง
- เผยแพร่เมื่อ 2 ม.ค. 2022
- Hello you lovely people, both Teresa and I realise it's been quite some time since we put out a video and we're sorry about that. Nevertheless, I'm sure all of you can appreciate this is the reality of chronic illness.
Just before Christmas I saw my consultant, it would appear after my Neuro exam she must have been quite concerned. It was Dec 2020 the last time I had IV Steroid treatment and they didn't really have much of an effect, but my Consultant was urging me to take the treatment again, so I accepted.
This video is simply a vlog, taking you through the three days.. we hope you enjoy.
Much love, Neil & Teresa xx
😷DIAGNOSIS HISTORY😷
▶︎ Transverse Myelitis (2008)
▶︎ Multiple Sclerosis (2013)
▶︎ Optic Neuritis (2019)
▶︎ Neuromyelitis Optica (spectrum disorder) NMOSD (2019)
💊FREQUENT MEDICATION💊
▶︎ Methylprednisolone (IV)
▶︎ Prednisolone (oral)
▶︎ Azathioprine (oral)
💉PROCEDURES💉
▶︎ Multiple MRI Scans
▶︎ Evoked Potentials (2013)
▶︎ Lumbar Puncture - Spinal Tap (Feb 2019)
----- Links to Social Media -----
▶︎ TWITTER: / spookynash
▶︎ TH-cam: / neilbradleyms
----- Playlists you might be interested in -----
▶︎ Tree & Neil's VLOG's - • Chronic Illness VLOG's
▶︎ My Life With Multiple Sclerosis - • (MS) My Life with Mult...
▶︎ Relapses, Steroid Treatment & The Effects - • (MS) Relapses, Steroid...
▶︎ Uhthoff's phenomenon - Heat Sensitivity - • (MS) Uhthoff's phenome...
▶︎ Trying to "kick" Lyrica (Pregabalin) - • (MS) Trying to "kick" ...
▶︎ Molly's VLOG - • Molly's Vlog
▶︎ Birds and Animals - • Birds and Animals
-------------- Music Credits --------------
Link : • Pipe Choir (P C III) -...
Title : Pipe Choir (P C III) - Inscencer (1 hour)
Artist : Pipe Choir
Source : www.pipechoir.com
License: Creative Commons Attribution 4.0 International License
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I'm so happy to see you again. Please take care of each other. Love, hugs, and prayers for both of you.
Thanks Kathy, it’s good to hear from you also. Please take care also. 🙏
So good, like seeing good friends again after a long time ☺️
Thank you so much, that’s very kind of you to say.
Today I was cleaning out my favorite folders and came across your story from 2016. I'm thankful you're telling your journey with MS. I belong to several support groups and the newly diagnosed ask so many questions. I don't want to tell them how bad this illness will get for them; we all need hope. I'm bedridden now as these old legs just give out, have no balance at all. 38 years now living with nonstop pain. I gave it a good run. Five years ago, I couldn't do anymore. It's hard on us and also the caregiver, we both get frustrated with each other. Loved seeing Teresa with her silly glasses, we all need laugher, I always said laugher is healing to the body. May God Bless you both, you're in my prayers.
Hi Janet, it's lovely to hear from you .. and I'm glad you re-discovered my video from way then. Life sounds very difficult for you, but know that I understand.
I too am living with constant 24/7 pain, discomfort and disability. Things changed for me a couple of years ago with a new diagnosis called Neuromyelitis Optica (NMO), it's rare and nobody has really heard of it, but it still belongs to the auto-immune family illnesses. The way I explain it is it's a more severe and painful form of MS, not to say that MS isn't painful because I know how much that it is. I wouldn't wish any of these conditions on anybody, hmm well maybe a certain president in Russia perhaps!
Yes, Teresa in glasses lol .. I wouldn't change her for the worldd, we are very lucky to have found each other.
I'm terribly sorry to read that you're now bedridden, this is difficult to hear and must be very traumatic for you, and also difficult for your care giver. I don't know how I would cope if ever I got to that stage, because for me lying in bed for too long actually makes things significantly more painful. My back to starts to hurt more, and my legs literally SCREAM at me with nerve pain. There's going to come a point one day ...
Much love and blessings to you dear Janet.
Neil & Teresa. xx
So pleased to see you both
Hey Michelle. Thanks 🙏
I really felt emotional when you said it's hard going through life unhappy. I've had MS since 2016, but I've really progressed fast and now use a walker or wheelchair to get around. I try and be happy for my family but it is so hard. I really enjoy your videos and hope nothing for the best for you.
Hello Lisa, how lovely to hear from you.. I don't believe we've spoken before. I'm so terribly sorry to hear that MS has got hold of you and is taking away your quality of life. Know that I do understand how you feel, I really do because I feel I've pretty much had everything taken away from me also. It truly is hard to be happy, it's how you're being made to feel by your condition. Even whilst typing this message to you, I'm in significant pain, my legs are BURNING, my chest is hurting, my finger tips are numb .. the list goes on. Somehow, I'm not sure how sometimes but I just carry on. I'm have no doubt you have similar feelings, and when you do try not to bottle them up. I always tell my wife how I'm feeling, she's a good listener and some how it helps when you share. If ever you want to talk, you can always post a message on here and I will get back to you. Take care - Neil.
I'm so very moved by the gentle kindness and compassion you two have in your relationship. I, too, am blessed with an incredibly kind partner and a rich relationship in spite of my serious autoimmune challenges. You're reminding me to cherish that loving connection because we can actually endure anything when we are loved.
Hello Jules, thank you for you lovely and kind message. I would surely be lost without my Soul Mate, Teresa. I'm extremely pleased to hear you too have a very good and understanding partner, it helps massively and makes us realise we're not alone in this journey. Sadly they suffer along with us though don't they, because they love us and don't like seeing us suffer.
I'm interested to know more about your auto-immune condition, but no pressure. You take care, and thank you for your message - Neil.
Lovely to see you both. Such a nice surprise 🌻
Thank you for being an inspiration. Even when our journeys are different in some ways, I feel like were part of the same family. I am very grateful for the information you provide thru this channel. I have learned so much.
When you mentioned the 100 bpm I am glad you too have an oximeter. I use mine quite often, as part of my "at home triage" devices. It helps to determine if another trip to the hospital is necessary.
I also resonate with your feelings with the high and lows of this life.
We continue to pray for you both. May you have success in the remaining appointments. Stay safe. Sending hugs 💕 God bless 🌻
Thank you so much for your lovely message. Im so pleased you enjoyed the video, even as you say our journeys are different. I’d be interested to know more about your journey if you so wish. Yes those oximeters are truly a god send, we’ve got just about everything you can think of with regard to home triage 😊 I’m actually spending the whole day tomorrow, yes, at the hospital.. it really is my second home! 🤷♂️ I’m having the six month, Rituximab treatment.. so it’s going to be a long day. Take care, and sending hugs right there back to you 🙏❤️
I've reached 140 bpm resting while on steroids... It surely sucks! Glad to have seen you both again, I really hope this course of steroids will have you feeling more and more better! Take care!
Thank you Kara, wohh 140 bpm is pretty high whilst resting.. it’s very unnerving isn’t it. Unfortunately it appears the steroids don’t seem to have helped me yet again (not like they used to). Although having said that, they did seem to reduce my pain a bit at the beginning of the treatment, so I suppose it’s not all bad.
Really miss it when we don't communicate but a busy season, medically and socially. Glad you are getting on with the treatment. I am having such a dilemma but getting a new doctor with insurance because I am relocating to a different state because I have to move away from the extreme heat....last year I was in and out of the hospital because it played havoc with my Uhtoff phenomenon. So moving to a cooler climate. So getting new doctors and new meds which I have to train these people because most of the experts are back east. Experimentation again. Not getting better but a tad worse. But next month will be 12th year with this MS. Stay well and say hi to the Christmas tree decorator ( she does department stores..she is fantastic ) Love to both of you and much prayers and blessings. Talk soon.
Hi Bodhi, good to hear from you .. yes I do recall you saying on previous occasions that you suffer terribly with Uhthoffs, as do I but not quite as much these days I don't think which I suppose is a good thing for me. I'm pleased to hear nevertheless you've taken some steps to help with this and are now moving to a cooler climate. This in itself though I expect is extremely stressful for you, so I hope the move goes well. I am sorry to hear you're not getting better though, hopefully this will be short lived and you will once again plateau or even better improve. Much love and prayers to you also my friend, take care.
Just wanted to wish you a early happy birthday. Your birthday is the day before our anniversary. Continuing to pray for you both.
Thank you Kathy, that's kind of you. My apologies for the late reply, it's been a little hectic this end. I hope you had a nice anniversary. x
I am so glad to see your name pop up on my YT notifications!! Rough time, please take care of yourselves n stay safe xxx
Hello Bec, and thank you.. will do. I hope this message finds you well, take care. xxx
I'm glad to see your post, as I was wondering only the other day how you are. Sorry things aren't so great. It really gets you down when there never seems to be a light at the end of the tunnel. I think we have to keep thinking that there are people alot worse off than us......so hard I know, but always makes me grateful for what I still have. Secondary progressive the last 5 years or so, and just about wheelchair bound now. Hang in there Neil. Never give up. Xx
Hello Julie, lovely to hear from you and thank you for leaving such a lovely message. That light at the end of the tunnel is always too far to reach for me, it seems to be a moving target, I'm sure you know this feeling. I'm terribly sorry to hear that you're almost wheel chair bound, I've been there back in 2018/19 (I think - there are videos on my channel) as Teresa was pushing me to appointments in the hospital. At this present moment in time I'm still able to manage very short distances on foot, albeit with multiple rests and very slow. You too hang in there, and take really good care of yourself. Sending much love 💞🙏xx
So sorry for you both. 🙏 I've suffered really bad with my heart, and Rheumatoid Arthritis 😭. I pray you both are well now.
Thank you so much for you kind message, I'm sorry to hear that your suffering with your heart and Arthritis.. this must be really difficult and worrying for you. My wife suffers terribly with Arthritis which is invading practically every major joint now. She struggles to sleep at night because of the pain, so we do understand. I hope this message finds you well, we aren't too bad thank you. All the best. 💞🙏
Well! Hiya Neil & Tree ! 🌲 We we’re so glad to find you had put up your video report! Both of us praying that the steroids work this time! It’s been a couple of weeks so hopefully they’ll be kicking in about now! Sorry to hear that Tree has been unwell and in hospital too! A late Happy Christmas 🎄 to you both, and a very HEALTHY, peaceful, prosperous and happy New Year! Much love from Portugal 🇵🇹. ❤️❤️🎄🎄🎄❤️❤️
Well look who it is, my favourite Portugal lady! Sorry it's taken a little bit of time to get back to you, nevertheless here I am 💞🙏 After receiving the steroid infusion on the 20th, 21st and 22nd of Dec (last year now), usually about ten days afterwards I notice a difference. I think there has been a touch of improvement, but not as much as I usually see with this kind of treatment unfortunately. I also had the same steroid treatment precisely a year previous in Dec 2020, and the results were pretty much the same, so it's looking like I'm not responding to this kind of treatment anymore. Ho hum, such is life. I hope you are doing ok, you've been through it just recently with one thing and another. We too hope you had a good Christmas, and a Happy New Year. 💞🙏
Very happy to see both of you again. I was worried about you. I will continue to keep you both in my prayers. God bless!
Hello Gwendolyn, thank you so much for your prayers 💞🙏
I was just thinking about you Two the other day, and wondered if I had missed a video from you! Got a bit worried when I saw I had not missed anything, but that you had been missing in action! So glad to see you posting again, but I am so sorry that you are not really much better.
Hi there, thanks for the message .. the steroid treatment used to last quite a long time, but unfortunately doesn't seem to now even with 12 months between infusions.
I had to watch this over again. Praying that you are both doing well!❤
Thanks Kathy. Not doing so great in all honesty. Just visited MS nurse on Friday just gone (05.08.2022) as my mobility has been spiralling downwards for quite a few weeks now. She thinks there no doubt I’m having another attack (relapse). Pain is through the roof but pain killers not working as my body has built up a tolerance. Just not sure which way to turn to be honest. The hope is they’ll get me in for 3 consecutive days of IV steroids which often pick me up. Having said that not so much on recent infusions, just have to keep trying though. I hope all is well with yourself. ❤️🥰
Hello, good to see you and hear from you both.
Please take care and look after each other which you do any way.
You really are such a sweet couple.🥰
Thank you so much Burco, and the same to you. 💞🙏
Happy New Year to you both x hope this year brings more positive and happy times for you both.
Hi Debrina, Thank you .. and Happy New Year to you also. xx
Only just spotted this,will watch soon x
Hi Neil & Teresa
Hope steroids have kicked in nicely. Good to see you both. Well done on parking. Best wishes Nic 🤗
Thanks Nic, I don’t think the steroids are working as well as they used too now unfortunately. I hope all is well with yourself. I saw your video whereby you fell and injured yourself quite badly, I hope your healing up now.
So happy to see you both! Praying that 2022 is a healing year for ALL of us.
Hi Jayne, I’m with you on that prayer 🙏
So very happy to see the both of you! It has been a long time. You both look great! I wish you much Love and healing. Your Christmas decorations and tree are Gorgeous Teresa! You are so creative. I wish you both a blessed and healing New Year❤️❤️❤️😘😇🙏🏻🥂
Thank you Karen, that's really kind of you. I too hope you had a lovely Christmas, and we wish you both a Happy New Year. 💞🙏
No need to apologise guys. Neil, your a trooper, you go through the thick of it and still smile and crack a few jokes. Theresa, if there was a wife award you’d deserve it, you are amazing. Love the glasses btw 😂 or goggles should i say. I hope these steroids really do what you want them to do. Take as much time as you need when you vlog next Neil, we all understand. Anyway, I wish you both a better new year!!!!
Billie
Hello Billie, how lovely to hear from you as always .. yes we try to keep smiling amidst adversity, it is difficult sometimes though. I completely agree with you with regard to the wife award, Teresa definitely deserves it bless it, she is phenomenal and I really don't know what I'd do without her. As for the steroids, they used to work their magic and last several months for me, but sadly now it's only days.. one has to keep trying though so if I'm offered them I take it. We also wish you a lovely 2022 Billie, all the best to you and yours. 💞🙏
Nice to see you both again xx tree looking lovely
Thank you so much Dena, I hope you are well. xx
Lovely, lovely to see you both!! I’m so sorry you’ve both had such a horrible few months but it’s great to see you both looking so well. Hope you had a lovely Christmas and new year and let’s hope 2022 is a much better year for you…. Take care 😊
Hi Stuart, thank yo so much. Our Christmas wasn't too bad thanks, I hope yours was ok also. Happy New Year to you. All the best.
God bless your both and so glad to see you both again!! Your tree is so beautiful :) I love the colors!! I hope this treatment helps you to feel better soon!! Keeping you both in prayers
Hello there, and thank you for your kind words. The treatment used to help for quite a few months, but sadly now it only seems to be days. Take care, and all the best.
Excellent video, thank you. Bless you, and Teresa is right,you always look gorgeous. Hope things are improving from the steroids,and you continue to do better. Spring is just around the corner, things always look and feel better with the nicer weather. Take care xxx
Thanks Dawn, it’s always lovely to hear from you ☺️ Indeed it would be nice if with Spring brought us all some better health wouldn’t it. xx🙏
The drought has broken:) Lovely to see you both. Happy New Year! Don't worry Neil about length of time between vlogs. I am sure everyone understands as I do that you don't feel up to it at times. Fingers crossed the treatment gives you some relief. Loved the Chrissie decorations, so glad you shared Teresa's creativity with us.
Thank you Willow, it's lovely to hear from you .. I hope you and Rod are doing well and also had a nice Christmas and New Year. The steroid treatment used to take a few days to get going, but then I'd feel ok for 2 - 3 months until finally I went down hill once again. But now, it doesn't seem to last at all .. perhaps just a matter of days and that's it.
Hi lovely to see you both,Happy New year, hugs from me, watching and following from Brisbane Queensland Australia ❤🇦🇺
Hello Elisabeth, and thank you so much! It's great to hear from you, especially from such a long way away. I'm actually a subscriber of a channel in Australia, it's called "Alright!WithMS", and the lady is called "Nic". She vlogs her life with MS, so if you're interested I'll leave a link to her channel below.
I hope that this message find you well, and also you've had a good Christmas and New Year. Sending much love from the UK.💞🙏
th-cam.com/channels/xpp_e_X3kApHH3VU_WasAg.htmlfeatured
I’m so glad you have Teresa to help you through this. Specifically because she seems to genuinely be on your side.
Hey Ryan, good to hear from you .. I am extremely lucky to have Teresa, because you are so right, she really does have my best interests at heart. But, the feeling is also mutual and has been since we've known each other since 1991, wow that's a touch over 30 years now.
I hope all is well with you too.
So lovely to see you both, missed you two so much.
Hope you both had a lovely Christmas & Best Wishes for the New Year 😊
Neil hoping you feel better soon, Not been too good myself for afew months (Stress) related, one bloody thing after another, its been a horrible year in so many ways, My cat Nuz had a neurological problem and it was horrific, we had to get him put to sleep but because of covid I wasn't allowed to stay with him, I was sobbing in the vets, not over it yet but it caused a flare-up cos I bought him back home to Bury him next to his sister under their favourite tree, so that was crap 😒
Teresa its so lovely to see you, hope you've been keeping well hun xxxxxxxx 😘😘
Hello Sue, Awwr we are so terribly sorry to hear this sad news about your lovely cat Nuz. I do know how HEART BREAKING it is to say goodbye to our animals at the Vets, but to not be allowed with them .. I just don't know what to say, soul destroying!. I'm glad you've brought Nuzz home with you so he's now close bye once again, bless you Sue our hearts really go out to you and your family at this particularly difficult time.
I'm not great to be honest, very up and down.
Take care xxxxxx
@@NeilBradleyMS
Neil your doing great considering what your goin through, Your strong 💪 fight against it, you have a strong mind & your gorgeous Teresa by your side, I hope Teresa is doing ok health wise too, shes a pure gem 💎 😀
Taking Nuz to the vets was the most horrific thing I've ever had to do, I stayed up all night with him asleep on my chest covered up in his favourite blanket, he was so tired 😢
Not being allowed to go in with him was really traumatic, I had to take him out his carrier, cuddle him and say goodbye and put him into a cage and hand him over they had perspex right across the room cos of covid, what pissed me off was I could have taken a test infront of them to prove I was Covid negative it was just so upsetting everyone was looking at me cos I was sobbing so much I actually couldn't control it.
Its gonna haunt me forever, I had to bring him home so hes still with us.
I keep looking at my other 3 now and dreading the time its gonna happen again, it actually put me into a bad flare-up with my Ms.
Plus after 2yrs of shielding and being really careful I literally spray everything with dettol everyday, My daughter sent my grandson down with a cold 🥶 It was Covid, Dave caught it first, then kate & her fella then me, dunno why I was last, but my mum didn't get it which was weird so I still after 3 months cant smell or taste anything, still have banging headaches feel nauseous every day & still coughing.
I think everyone with a medical condition are really going through the stress of all this at the moment, Covid knocked me off my feet its absolutely horrible.
Hello, Neil & Teresa. Happy New Year to both of you. You, Neil are very strong in the way you are combatting what I would call a bain. Teresa, is a rock of strength. Good luck to you. Keep on battling, and stay strong.
All The Best from Alan.
Hi Alan, and Happy New Year to you .. thank you so much for your kind message. Oh yes, definitely a "Bain" I will agree with you there. I've popped over to your channel to see what you've been up to (I'm already subbed) .. nice to see you're still putting videos out there. Take my friend, and all the best to you.
And there was my Christmas present! I love how you two love each other! It was wonderful to see you. I hope the treatment helps longer than you expect. My diagnosis is apparently "final" Progressive relapsing MS (look it up... just like me to get a diagnosis like that) LOL. I'm just so happy to see you both! Hugs and much love from the Desert Southwest.
Hey there, how lovely to hear form you as always.. I'm terribly sorry to hear that you've now gone into the 'final' stages of MS. I have just looked this up and had a little read, it's also known as 'advanced'. We just have to keep going best we can though don't we, even though (certainly with myself) I don't feel like it sometimes. You hang in there J .. and I'll try not to leave it so long for a video next time (no promises). Much love to you. 💞🙏
@@NeilBradleyMS all my love and prayers for you both. I love you!
A lady who taught me to read at school ( many years ago) is currently in the Royal Derby at the moment, waiting for a carehome place) I'm watching right now 👍, love the mask Teresa 😷 🤣, so glad to see you both again, we've not met but you feel like friends. I suppose the weakness is a viscous circle thing, your muscles weaknesses from when you are less mobile and when you do get the slight improvement your muscle tone will have reduced from before, leaving you weaker, something I have been noticing with myself being less active . Right, there's another video to watch.
Hello there, good to hear from you again.. and how about that, somebody who is obviously dear to you at the same hospital Teresa and I go to. It really is a small world isn't it. Yes, I totally agree with you regarding muscle weakness etc and being less active. I try to do some PT exercises (I taught myself) each day which I feel really do help, but the problem is quite often I literally don't feel strong enough, or have the energy to do them. Take care my friend. 🙏
@@NeilBradleyMS I understand, I'm sure you try everything to help as you say when you are already weak , viscous circles etc, take care & best wishes to you and Teresa xx
Thank you, and best to you also.
Hi,so good to hear and see how you are faring! So sorry you had to be hospitalised but glad you good care!Happy Holidays! I'm glad you are getting the meds,it's a bumpy ride coming down but enjoy the highs! Love your Christmas decor Teresa! Cheers to the New Year!
Thank you so much Avril, and as always is lovely to hear from you. I hope you are doing as well as can be. Yes, coming down is always a bit of a bumpy ride.. as it was also this time. Unfortunately the steroid treatment hasn't really lasted, like it used to a few years ago, but one has to keep trying don't they. Take care.
@@NeilBradleyMS Yes we do have to keep pushing Onward and Upward. Hoping they can find medication to help,you know it's up and down for me. Sending you all best wishes from across the waters!
It is a treat to see you both again. Thanks for the time and effort it takes to produce these snapshots of what the day(s) brings to you. Love love love the humor you two throw out at random moments.😂Teresa's comment "Nanook of the north"😆reminds me of...the second track off of Frank Zappa's 1974 Apostrophe(') album, titled "Nanook Rubs It". Just a silly bit of comical humor set to music. Hope you score big time with the steroids. Been a pleasure, love you guys.
Thanks Lee, yes my dear Wifey likes to throw in those little bits of humour at random moments lol, I never know what she's going to come out with next. Wouldn't change her for the world though.
Hugs from me. Watching from Germany and Like you as such an amzing couple. I was diagnosed with MS in 2015. I do not take any medication but diazapam when my spasm hurts too much. And i Take Vitamin D. We need to find our individual way to handle the Situation. Be blessed!!
Hello Kayja, thank you for you lovely message. I'm sorry to hear about your diagnosis, hopefully you have your symptoms relatively under control. I also take diazepam on occasion, but I do take Vit D daily as part of my treatment plan. I hope you continue to be well, take care - Neil & Teresa xx
Hi Neil and Teresa 🤗!! I am so happy to see you both again! I had been thinking about you two and had been wondering if everything is ok. I was going to send you an email to find out if everything was ok, but you beat me to it!! Lol Hoping this treatment gives you some relief, even if it’s for a short time. Hope you both had a nice Christmas and a Happy New Year 🎊 Take care and please keep us updated 🤗💖
Hi Kelly, it's always lovely to hear from you. We too hope you had a nice Christmas and New Year. The treatment worked a little, in as much it reduced my pain a bit and slightly improved my mobility. The effects used to last several months, sadly now though it only seems to last a few days, or whilst I have the treatment. Ho hum.
Happy New Year to you Neil and Teresa I hope your Christmas for the both of you and your family was good. I am happy to see you both Teresa I love your Christmas Decor, especially your christmas tree purple is one of my favorite colors love it all !! Neil that is so funny that you showed you new Oxygen and Pulse and Heart Rate Sensor Because I just bought one the other week!! ( You must have read my mind!?! What a Coincidence.) I needed to get because at a recent doctor appointment my Oxygen Level was only showing that I was only getting about 72% of Oxygen ( I don't think their device was working because I don't think I would have been standing I would have most likely would have needed an Oxygen Tank or Device to use also, But when the nurse tlod me my levels and to me my Oxygen was at a 72% She did not say a thing so I guess in her eyes that Oxygen Level was good? I was told that I would have been admitted to the Hospital for being Oxygen deprived. I will say this Neil since I have been on your channel for years I have wish for you to be pain free or some what pain free ( That you could tolerate it better.) I have hope for you I know you did say the treatment could be only a couple of weeks, but I am hoping like you are that it could last you maybe a month or a little longer that would be super for you. I can tell you are looking a bit chipper and happier and good in your face. Teresa love your goofy glasses and Christmas earrings together I call it Halloween and Christmas together two parties in one 🎉 Good 👍 don't look back, don't keep thinking is it working or not 🤔, Just take this and ride with caution you will be back to normal or somewhat normal feeling again. Don't keep thinking about pain If that happens because then you might start think it is not helping but it is type of feeling, I know because living though it 24/7, But a long time ago I just learned to live with it, then going though the Leukemia million years later time from when my pain issues from being hit by that SUV in 2003, it will be 7 years on May 13, 2015, But I am So happy for you both and you. Take Care, Amanda and Logan
Hello Amanda, how lovely to hear from you .. my apologies that my response is several days late. Thank you for your kind words, it was very interesting to read your message. I felt ok for a while whilst having the Steroid treatment, the pain reduced quite a bit and my mobility, well shall I had a little bit more control, sadly it was short lived. Now I'm back to lots of pain once again, and rapidly downhill mobility. I just can't win. Take care both of you.
@@NeilBradleyMS Hello Neil it is total fine that you did not get back tor A.S.A.P I know you will will respond when you can it's totally understandable. Well it was your first treatment ( I assume in time or your next appointment with the doctor to see how the treatment worked for you maybe if it is decided to possibly try the IV Treatment again?) I know you said it could help for weeks or possibly month or months. Maybe the Doctor will wait untill it's safe to readmister the IV Treatment to you again, The second time could be the charm to getting relief. Don't give up you have come to far for this treatment not to give you relief. I and Logan are praying for you that you will be in relief by this IV Treatments. Tell Treasea that she is in our prayers too I know she was having issues too. Just the both of you keep positive and safe. You both take care ❤️ Logan & Amanda
Hello Neil and Teresa , it’s so lovely to see you both, I’m glad you managed to get some steroids , and that you’re feeling a bit better pain wise. It just goes to show it’s the inflammation which causes all the problems. Have the steroids given you any further improvements ? Fingers crossed they work for you. Hope you both had a great Xmas. I’m not doing too bad at the moment . Lots of hugs and much love to you both as always, Grace ☺️
Thanks Grace, lovely to hear from you. Unfortunately no further improvements and I’m now pretty much back to where I was before having them. In the past (but not the last time in Dec 2020) they’ve always worked and given me a few months of relief. They did have an effect on reducing my pain having said all that. Anything is a blessing I suppose.
@@NeilBradleyMS oh that’s a shame Neil ! I was feeling quite optimistic for you especially when you mentioned you had a reduction in pain. Let’s hope this new year is a good one for us and that we see improvements in our health. We can always hope . Look after yourselves.
hey Neil, not heard or seen a video in a while. Hope you are both keeping well 😊
Hello Indie, I'd be lying if I said things were good at the moment. My physical health is just spiraling downwards with increased pain and worsening mobility unfortunately. This seems to be taking it's toll a lot on my mental health also which is difficult. Generally things are ok with both Teresa and I though, she is amazing support for me and I don't know what I'd do without her.
I hope you too are keeping well?
@@NeilBradleyMS hey Neil, sorry to hear things are not good with you. And your physical condition is not good which is making you more down and effecting your metal well being. Hang in there. Yeah know how you feel. My walking is bad now i have 2 sticks. I do wonder what all the drugs they gave me did. Struggling at work and driving thinking about cutting hours not helped with no contact with MS nurse suppose we are not moaning it's facts hope thing get better for you and your wife sounds very supportive
Hey Indie, thanks .. yeah I'm trying to hang in there but it's very difficult at times. This illness has literally taken everything from me, including the job I loved. I'm just stuck in these four falls now, it's so hard to stay positive but I try by trying to focus on the thing I enjoy doing, usually computer related now.
I'm sorry to hear your walking has worsened to the point whereby you now need two sticks, not good at all. I always walk with one stick, but I've been feeling so unstable just lately I said to Teresa the other day, I don't always feel safe with one stick. Who knows, it might not be long before I'm using two also.
You are doing so VERY well still continuing to work, I take my hat off to you. I can't imagine what it must be like. I loved my job, and I've only just 'officially' given it up about six months ago, although I've not been working now for about 3 years. I started my job when I was 19, and I'm 50 in September! It's the only job I've had, and I loved it. It was very emotional having to make such a sacrifice. I'd been tapering my hours off slowly, just had no choice in the matter. My body dictates, the pain and lack of sleep was just getting too much (I used to write computer software). I often say to Teresa, I don't know how I would cope having to work now, it simply would not be possible.
If you are able, I think giving some thought to cutting your hours is a good idea. This will give you more time to focus on yourself and your health for sure. It will also give you a taste of reduced hour, and allow you to see how you feel about it.
My MS nurse is currently on leave and there is nobody to take her place whilst she's away. The hospital are very under-staffed, I've been in touch with them a couple of times, messages are passed on to my consultant but nobody comes back to me. Feel like I've been forgotten, you probably feel the same don't you with regard to your own situation.
Goodness, look at this long message.. sorry about that. Please don't feel you have to respond, but know that I do understand what you're going through.
Take care, and I hope you have a good weekend.
Best regards - Neil.
Hiya neil, we seem to be in a similiar situation. I have ms but heavy spinal lesions and have needed 11 lots of highdose methylprednisolone in the last 18 months so i can understand your pain. Has your consultant spoken to you about hsct ? If your having more activity on rituximab you would likely qualify like i have on the nhs. I started in november and go back once covid cases drop for the second half and i already feel better.
Hi Daniel, wow that is a lot of Methylpred in such a short amount of time .. do you find it helps you at all in as much as it should be reducing inflammation and perhaps you notice an improvement in your mobility?
No, my consultant hasn't spoken to me about HSCT, but I do know what it is and have researched it in the past. My understanding is, they basically "re-boot" your immune system by killing it off with Chemo, then do the stem-cell transplant in the hope it comes back to life and functions a bit more correctly. The only problem is, damage that has already occurred cannot be reversed.
I personally wouldn't be keen on taking part in the HSCT treatment, and I'm not sure if you know this but it is VERY aggressive. The chemo can end up making your symptoms significantly worse, and in some cases it can be fatal resulting in death. So, it's not really a therapy I'm willing to consider just yet.
I hope this message finds you well Danie,
All the best - Neil.
@@NeilBradleyMS hiya neil, i do notice a massive improvement but sadly it only lasts a few weeks for me. My ms has affected my brainstem and spine unforuntately and is very inflamatory so any improvement is always temporary. What is promising is that the improvment with steroids suggests the damage is due to inflamation and not permanent nerve damage so the hsct should be helpful. Im currently undergoing the procedure in london, ive had the first half with initial chemo and stemcell collection but due to covid the second half has been put on hold. Alot of people in the hsct advocacy group have found huge improvements in damage they thought permanent for years which has also been identified by neurologists and they are starting to look into the mechanism in the treatment that can cause the improvment. The first neuro i was sent to had no idea about it and the second which was a specialist in ms advised almost immediately that i should be put forward for it and im now recieving it through the nhs.
Sorry for such a long winded comment i just see so many similarities between our symptoms and understand the daily struggle so wanted you to know your not alone and make sure you didnt miss out on something that could possibly help. The death rate figures are well below 1% now most of the deaths were when it first started being used back in the early 2000s and was used for people that were higher edss score, its now done routinely as part of treatment for a whole host of diseases. Im only 30 so for me it was a bit of a no brainer but o may have felt diffrent if diagnosed later ib life.
I hope your keeping as well and as safe as possible neil, keep on keeping on as best you can and know we are all here in support 🙂
Hey Daniel, I really appreciate you coming back to me on this, apologies for the delay in responding. TH-cam isn't the best at notifying me about comments etc.
WOW - so you're actually having this treatment currently, that's AMAZING and I genuinely wish you all the very best luck, and that it works out for you. I do hope the treatment hasn't made you feel too sick, I've got my fingers crossed for you.
I do understand about the inflammation rather than permanent damage, it's the same for me which has been proven over time and time again with steroids.. although not so much in recent infusions. I've not long posted another video however because at the moment I'm going through a period of small improvement myself having recently had steroids (on 20th, 21st & 22nd Dec 2021) and now Rituximab last week (18th Jan 2022).
It's well worth documenting your progress if you aren't doing already, perhaps one of the easiest way of doing this is just video on your phone, remembering to put the date and time of course! It's really interesting to look back then to see how you've been. This is one of the reasons I do my channel, on recent videos I've started to always put the date in the top right hand corner of when the actual footage was taken.
All the best Daniel,
Neil.