RITUXIMAB TREATMENT (AKA OCREVUS): "Something is happening?" NMO | MS | CHRONIC ILLNESS
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- เผยแพร่เมื่อ 20 ม.ค. 2022
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▶︎ My VERY FIRST Symptoms - • Multiple Sclerosis - M...
▶︎ My MULTIPLE SCLEROSIS Diagnosis in 2013 - • Multiple Sclerosis - T...
▶︎ The VERDICT, MS or NMOSD - • The Letter | The Verdi...
▶︎ My SHOCKING Consultant Visit - • NEIL'S SHOCKING CONSUL...
▶︎ This is what happened to me after IV STEROIDS - • WHAT HAPPENS WHEN YOU ...
▶︎ BEFORE and AFTER IV Steroids - • CHRONIC ILLNESS DAY IN...
▶︎ Never thought I'd be WALKING like this again!! - • NEVER THOUGHT I’D BE W...
🤒 CURRENT SYMPTOMS 🤒
Numbness, Burning, Tingling, Humming, Buzzing, Squeezing, Skin Sensitivity, Altered Sensation, Balance problems, Chest Pain, Muscle Weakness, Stiff Lower Back, Stiff legs, Stiff knees, Blurred Vision, Anxiety, Depression
👣MOBILITY ISSUES👣
Muscle Weakness, Spasticity, Clonus, Abnormal Gait, Tremors, Walking difficulties, Falling.
😷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)
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First stumbled across your videos 5-6 years ago when having undiagnosed symptoms.. saw consultant and he thought it was MS, has MRI and all clear so sent me on my way. I followed a strict diet and all leftover symptom disappeared over the following year or two… did my usual allowance of ‘unhealthy’ food this Xmas but didn’t stop properly afterwards.. have been experiencing all over parasthesia now for the past 5 weeks.. sensitivity, pain etc… now easing off..who knows what it is. Symptoms did start offer changing job after 26 years so could be stress induced.
Hey there, I remember you well and it’s good to hear from you again. Hmm, the all over Paraesthesia definitely sounds neurological doesn’t it. Whenever I’ve got new symptoms, I often blame the food I’ve eaten, but the truth is I eat very healthily anyway, so I’m not really so sure. But, I do think certain types of foods can trigger things. It’s extremely common for my symptoms to get worse after eating a meal, Uhthoff’s Phenomenon, although recent years it’s not been too bad. Hopefully you’ll be able to get to the bottom of what’s causing it.
@@NeilBradleyMS Yes, it's kind of silly the way we blame ourselves for eating something we shouldn't have and then having symptoms become worse. I realize afterwards that I have NOT done anything wrong!! I have MS or NMO - or both!!! And that's hard enough, without throwing guilt into the mix. We sure can be hard on ourselves. I've been thinking about you, and came to re-watch your last video. I'm glad to see you still up here 4 days ago!!! Blessings to you both.
BTW just an note. There is a man who only does videos when he feels like it & not a set schedule. It's called 'just whenever.
Sorry haven't been on.
Woke this morning after another rough night with mum and this has made a rough few weeks a bit more bearable.
I smiled when I saw you trotting around the garden.
And loved the little chuffed wave to Teresa.
Whatever it takes kiddo,you got this
Happy days
Thank you Michelle, and it’s lovely to hear from you as always. I’m sorry to hear you’re having a rough time. I’m not sure of your circumstances but I do hope things improve for you and your Mum. I’m still not too bad, but this morning I’ve woke and literally somebody has take my batteries out, no energy what so ever. Hopefully as the day goes on I’ll feel a bit more with it. Take care 🙏💕
This is so fantastic Neil!!! I am so happy for you 🤗 A significant change!! You get some relief and get to live life again 👍 So happy you posted this. Prayers to you and Teresa 😘🙏
Thanks Kelly, I appreciate that. Since filming I'm a bit up and down, but now too bad.. things have certainly been slightly easier and I can see glimmers of hope, but I've been here before. I'm trying not to be pessimistic though, but we shall see what happens. I will of course document it in videos as and when I feel up to it.
I do hope all is well with your good self. 🙏💞
🙏🙏🙏
Congratulations on starting Ocrevus. I use it here in North America. Been on it about 3-4 years. Long term use works for some people-some it doesn’t. They have never monitored my levels except normal blood work. I wish they did. They just give it to me every 6 months regardless. I wish you continued success on the treatment.
Thank you very much .. I'm actually taking Rituximab which is basically Ocrevus under another name. So yes, they told me they would be monitoring my blood levels every month now for the rest of my life and will only bring me in for an infusion if my CD19 Count starts to rise.
WAHOO!!!!! WAY TO GO NEIL!!!👏👏👏👏👏👏👏👏
Thanks, it's about time something good happened .. my only concern is however, how long will it last. But, I'm trying to keep looking on the bright side and being positive.
Good to see you moving around so well Neil!
Thanks so much 🙏 I’m just hoping it lasts because usually it doesn’t. I’ll take anything tough.
I'm so happy to see you up and about. Praying for you both. Sending big hugs.
Thanks Kathy.
I am in Ocrevus for 4 years now and it has saved my Life and made it worth living again . Rituximab seems to work great for you . It just takes time to work . My MS got stabile after the first year on Ocrevus, and then even showed some slight improvement after 3 years. Stay positive and keep at it 👍🏼
Hi There, thank you for your message which does inspire me. I hope that given a bit more time things will improve, but at the moment (13-Apr-2022) I'm not seeing anything significant unfortunately. I'm pleased to hear that things have stablised for you.
👋😊 my friends I'm so happy for you !!!!👋💪
Thank you Gitte, it's lovely to hear from you once again. I hope you are doing ok?
Thats great your up and about again I'm happy for you Neil
Thank Chris, I appreciate that. I recall from our previous conversation that you've not been so good yourself. How are you currently?
I'm happy you are feeling a difference. I hope I do as well. I just found out I have Musk Myasthenia Gravis the end of last year. I have been trying to get a diagnoses for my muscle weakness and fatigue for 3 years. I have had every test under the sun, but in the end, I asked my doctor to check me for Myasthenia Gravis after doing online research, and she checked me for both types - the acetylcholine antibody type, and the Musk type. I was positive for the Musk type. I have been on Prednisone the past month, and I start my first Retuximab infusion this coming Monday. I hope it changes things for me. I am more hopeful after seeing you have some success. Hope you keep feeling better!
Hey there, it really comes to something when we have to do our own research and present the findings to the Doctors doesn't it?? Well done you for figuring it all out! I am however sorry to hear you've been having these symptoms (which I had to look up) and now a diagnosis. Sometimes though when receiving a confirmed diagnosis, it's often relief because you now actually know why, and what's been happening to you.
I'm also on Pred daily 25mg, but also I quite often go into hospital for 3 consecutive days to receive Methylprednisolone by IV infusion (in the vein). This often reduces inflammation and picks me up, but this last couple of times it hasn't been so effective. I received this treatment in Dec 2021, then followed shortly after by the Rituximab which is primarily a preventative treatment (supresses your immune system). I've never actually had both of these treatment close together so it's a first for me. I am having the odd one or two good days, and I've noticed my mobility does seem to be slightly improved.
I wish you well with your Rituximab treatment, I'd interested to hear back how you get on with it. Good luck.
@@NeilBradleyMS thanks, I'll update you on how it goes for me. I'll follow you as well.
Over the moon happy for you. With Affection, Melinda H.
Thank you so much Melinda, you're so kind.. and it's lovely to hear from you. I hope this message finds you well. Take care.
GREAT CHANNEL & VIDEO! I wept when I saw this. So happy for you & Teresa. Keep us posted as you are able no matter what happens.
Ahh Bless you Shirly, I found your message very touching.. I'm still a bit up and down, but we shall just have to see how things go. I will of course document in videos to keep you, and everybody posted. I hope all is well with yourself, take good care. 🙏💞
I’m glad to hear this. That’s fantastic, Neil. 💜
Thanks Maria. 🙏💞
I need prayer. So much pain & sadness. Thank you
So sorry to hear this 🙏
Congratulations!!
Well done Sir Bradley, well done indeed. I understand the concentration it requires, which is one of the more frustrating things to articulate to the "chronically healthy".
Hi John, yes it really is difficult .. when I'm watching the video I feel like I'm making it look quite easy to walk. But my GOD it SO difficult, not only is there considerable pain, there is also muscle weakness still BUT because of the slight improvement I have a little more control and balance. I completely agree with you it is so difficult to articulate this to 'normal' healthy people. Best to you.
Incredible!!!❤️❤️❤️❤️❤️
So happy for you.👍
Thank you so much!!
Woohooo!!!! Look at you , brrrrrrilliant, everything crossed for you ( have kept you both in my prayers xx)
Thank you. I've got a feeling like with other times it won't last, but I'm trying to remain positive and I'll take anything to be honest.
Brilliant! Happy New Year!
Thanks Kelli, Happy New Year to you also.
Neil I’m so happy for you! And you look great!!!👍😘😇❤️
Thanks Karen, appreciate it. 🙏💞
Great to see you moving, walking, and being able to carry stuff. Keep up whatever is working for you.
Hey there Ed, it's great to hear from you. If you recall I discovered your channel a while back through one of your Oramorph videos. Well, I'm taking it quite regularly now .. and whilst I don't like taking it so frequently, it helps me with pain and symptoms massively. I hope all is well with your good self, once again really good to hear from you. Cheers!! All the best - Neil.
@Neil Bradley MS I'm a huge believer that if it helps, then crack on mate. We all need what works, as long as we stay as near sane as we are, all is tikadeboo my friend 👍🏻
Hello Beautiful people! Neil you look great! We have to keep on keeping on or we will lose it. Warm thoughts and wishes.
Thanks Jayne. 🙏
Im crying happy tears for you
Bless you Michael, and thank you so much. 🙏
Well done Neil! I’m so pleased for you! I hope you continue to get better! Much love from us both in Portugal 🇵🇹♥️♥️♥️ Love to Tree too! 💖💖💖
Thanks Susan, much love to you from the both of us. I hope it continues. 💕❤️💕
@@NeilBradleyMS by the way, how’s Cedric doing? 💕
@@Susannewk Well .. he's about, but I haven't seen a great deal of him this year. I think it's because I've been struggling so much, I've just wanted to feed the birds and get back to the house, so I've not really paid as much attention as I normally would.
I'm really happy to finally see some progress! Finger crossed this will be the start of a lasting improvement!
Hi Kara, thank you for your kind message. Unfortunately since publishing this video a few weeks ago I've returned to my usual, not very mobile self. It was nice whilst it lasted I suppose. I hope al is well with yourself.
@@NeilBradleyMS That's too bad... I'm not great either, side effects are starting to take a toll on my bones, and that's quite scaring since I'm still young. Let's just hang in there, what else can we do? Big hug to you and Terry form Italy!
Neil sorry I am late getting back to you! I thumb up as soon as I seen it for my time zone this morning and just got it now. I am happy that I did because your will and can are you. What can I say!?$#@ It is TOTALLY AWESOME 👍
I can remember all those years ago I was in search of finding someone man or woman who was in Chronic Pain and came across your page (Of Many). I read up on your videos put the old ones first to catch up when you would post sometimes short or long. I was their for your journey, and then with the ups and downs of COVID-19, I have to say I have such a big smile on my face under 😷 This made my day to see you walking and bending. I hope this can last awhile for you, But Just Take It EASY. I have couple of questions, How long after your treatment did this start happening for you? How is your pain issues or numbess if you get that some times or spasms? How dose it feel to lay down I hope better results to sleep better. I hope. I am super happy for you and Tresea I am sure she was crying out of happiness. Neil if you can get to right me back right away I know you will. When ever you can depending on how you feel. Logan is over having COVID-19 But he still has to keep masked he will be getting his third booster shot next week. He has to wait till he feels better Which he is fine but he is masking when we have to go out I and Logan
are Elated for you this means alot I am hoping and praying for you Neil Take Care, Amanda & Logan ❤️
Hello Amanda, please no apologies necessary, it's just always nice to hear from you. Yes, I'm very familiar chatting with you over the years, I think that perhaps you were one of my first subscribers, maybe even in the top 100 !! I'm super happy that you're still with me (and Teresa) on the journey, wouldn't be the same without you!! :)
In answer to your questions, I had IV Steroid treatment for 3 consecutive days on Dec 20th, 21st and 22nd (2021).. in the past I've responded quite well to the steroids, but this last couple of times I haven't. However, I've never had Rituximab so close to having Steroids. I started to notice little small improvements possibly about two weeks ago, so lets say about the 8th Jan 2022. I'm still having ups and downs, but on the whole a little improvement.
No change in pain and numbness thought I just feel a little stronger and more in control of balance. I have been doing some PT exercises as well though, now that I actually feel strong enough to do them. I'd given up on the PT exercises simply because I've been feeling so weak. No sign of any spasm in my legs since I've been regularly taking a pain killer called Oramorph, basically its Morphine. I don't know why this is though because Oramorph is a pain killer as opposed to a muscle relaxer.
As for sleeping, not too bad at the moment thank you, I'm mainly struggling with significant pain towards the end of my sleep cycle so about 5, 6, 7am. Pain is usually the reason I'm up early even though I want to sleep for longer my body simply won't let me.
I am SUPER HAPPY Logan is getting over Covid, I expect that you've both been really worried. This is really good news to hear Amanda. I don't think it's a bad idea to continue wearing the masks, you know just in case. They are relaxing the rules now in the UK, but we are continuing to wear masks.
Great to hear from you both, please take care.
Much love and best wishes - Neil & Teresa. 💞🙏
Congratulations!
Thank you!
Amazing 🙌🙌
Hi Neil Wow fantastic improvement. Well done. Best wishes for a positive future 😊
Thanks Nic. 🙏
Oh great. I just started watching this. From a hospital.
I wrote that only a few seconds into the video. Wow. You look like you’re getting around much better. I hope it’s a new beginning.
Thanks Ryan, good to hear from you .. I'm concerned to hear you're in hospital though? I have to confess I've not been over to your channel for a week or so.
Ok, so I've just been over there and seen the picture of you with monitors all around.. I hope you're doing ok. I'm going to have a read of the comments now.
Awesome, congrats.
Thank you! Cheers!
Wow Neil this is amazing! When do you say the last time you saw this much significant improvement in your mobility?
Hi Paolo, thanks! It was probably Dec of 2019 going into Jan 2020, as this was when I had IV Steroids and started all this daily medication. I recall cutting the Tree's in the garden, so I must have been strong enough then. That said, I don't feel that brave at the moment though.
Oh, Yes, YES! Even though life is not easy, you've had some relief. We'll gladly take any improvement we get. Much love to you and Teresa!! Your home looks wonderful.
Thanks so much Elaine, I'm not sure how long it will last .. since making the video I've been a bit up and down, but not too bad. 🙏💞
You two beautiful people. I'm smiling at both of you. 💙💗💛
Thank you so much Diane, I'm seeing you smiles.. gratefully received. 😊😊
So happy to see you getting some relief at last. Long May it continue Neil. Great car you’ve got there - but I would say that 😀 Hope Teresa is ok too. Hope you put another video up soon . Take care 😊
Hey there Ian, thanks for that. Yes this is my 2nd Honda Accord which we purchased in March of 2013, so this year I will have had it 9 years, and honestly it drives as good as the day I brought it. Prior this car, I had .. yes you've got it.. another Honda Accord, an older model which I brought in 2004. I loved that car which I'd had also for about 9 years, but sadly I had to part with it because it was a manual gearbox and I'd started having trouble lifting my leg to operate the clutch etc. My current Honda Accord is Automatic, and it is just AMAZING, 2.0L Petrol, and it literally just GLIDES over the road, it's so quiet and refined and such a pleasure to drive. Unless a miracle happens with my health it will be my last car. I noticed your Profile picture says HONDA, so I have no doubt you too are possibly a Honda driver, or maybe Motorbikes. I'm interested to know. Take care.
@@NeilBradleyMS hi Neil. Yes I’ve got a Honda and it’s an Accord too.
I’ve had it nearly 4yrs and never had a problem with it. I try and do most repairs myself and do all the servicing. It is my 1st Honda and I wish I had gone to Honda sooner - usually had Mondeos. This Accord is a 2006 saloon. It’s a 2.0 manual. I was looking for a 2.4 Accord but this one came up for sale at a garage nearby. I’m sticking with Hondas from now on. Like you said, they glide down the road and are a absolute pleasure to drive. I may get an Automatic next, but don’t want to move away from my current Accord, as it’s so good. It’s a lot better car than my previous Mondeos. Yours looks spotless from what I could see briefly in to your last video.
Hi Ian, I couldn’t agree more with everything you’ve said. I think I know which model Accord you have, very nice motor! I used to spend many a happy day washing my car, then cleaning it inside as well. But sadly now, I have to pay somebody to do it.. fortunately I’ve got a really good guy who doesn’t charge the earth and I really trust him. I totally understand you not wanting to part with your current Accord, it was the same for me. If the day comes though, I do recommend an Auto .. the gear changes are so smooth. I’ve got a private plate on my car, but it’s actually a 2009 Model. All the best mate.
Oh YES!!! This makes my heart so happy! I can see the intense focus as you walk BUT YOU WALK!!! Oh just enjoy it while you have it. We never have more than this moment. But this moment is AWESOME!!!🥰
Thanks J, I very much appreciate your kind words, as always. Yes, I can walk but as you say it's not easy and takes a lot of concentration and effort, it's painful as well but I have to try and see past all that. As for this moment, I agree with you.. in fact I have a quote on my FaceBook profile which simply says "🙏 All that matters.. is right now 🙏" and it's so perfectly true isn't it. You take care now. xx
@@NeilBradleyMS I love you guys!
Though it may take some concentration, it is Wonderful to see you more independent once again🥰. Prayers and Blessings to you both!!!
Thanks so much, I'm just not sure how long it will last.. it doesn't usually, but we shall see. I've never had IV Steroids and Rituximab so close together, so it will be interesting.
This is such a good result! Keeping your balance and carrying heavy bag 😃😃
I really hope you full regain everything back Neil 👍🏽👍🏽
That would be so nice, to regain everything back - wow - I dream of that, but realistically I don't think it will happen now not after this length of time. However, it does prove that I am still capable of improving which is inspiring. I hope all is well with you. Take care.
@@NeilBradleyMS You never know Neil. Unpredictable MS could work in your favour for mobility. I’m really wishing it does 🙏🏽🙏🏽
I’m also on Ocrevus and have my 2nd infusion next month (February). I’m hoping it helps my mobility too
Woww,look at you Neil!!! How about that turnaround you seem to be doing well. How are you feeling?
Avril
I just had to check when this video was made, and I see it was back in Jan this year. I actually decided to watch it again myself (at 3am this morning as I was awake as usual) because honestly, at this present moment in time I'm about as bad as I've ever been and continuing to spiral downwards with increased pain and worsening mobility (hence no recent videos). I was actually quite shocked when I watch this video again because compared to now, I literally couldn't believe it!! So I can completely understand your "Wow!" comment Avril, it was the same for me. I put it down to the small amount of IV Steroids (125mg) they gave me just prior to my Rituximab treatment.
In general, we are both keeping well, and thank you for asking .. I am however struggling a lot with my mental health at the moment, but this is as a direct result of my failing physical health. I'm sure you probably know the feeling of not really knowing what to do with yourself, sometimes it's easier to say what doesn't hurt than what does.
How are you getting on generally, you said in a previous message you've not been online for a while. I do hope this isn't because you've been too poorly.
Sending healing thoughts - Neil.
Oh wow! So good to see you moving so well! No walking aid either. I hope it lasts. :)
Thanks Lorien, I hope it lasts too. I'm trying my hardest to stay strong and keep the old muscles as best as can be with PT exercises I've taught myself, seems to be working. Fingers crossed. Take care.
This is fantastic! I'm hoping you have continued wellness ❤ I'm hoping to start Ocrevus soon!
Hello Cariad, thank you so much for that .. yes that is my only concern, I'm hoping this small improvement lasts for a while. I've heard a lot of good reports regarding Ocrevus, it's basically the same drug as Rituximab and an excellent preventative treatment. I'll keep my fingers crossed for you. 🙏
@@NeilBradleyMS I want to start it I've been nervous of PML but they all have side effect profiles! I think you'll do great! 2x a year right?
I completely understand your concerns about PML, it's the same for me but I've now been immunosuppressed for over two years. They do monitor you, so I don't feel so concerned now.
Well I thought every six months, but not anymore .. now that I've had two cycles over treatment (Rituximab) they monitor my blood and if my CD19 (B-Cell Protein) starts to come back up, they bring me back in for treatment again. It could be 6 months, 12 or even 2 years, or it could be less than 6 months so it all depends on my blood results which I'll have to have done every month now pretty much for the rest of my life.
@@NeilBradleyMS that's interesting information about infusion, and I feel a bit more confident that this will be ok and work for me! Thank you for posting ❤
You’re welcome. The protocol might be different for Ocrevus, by this I mean I think you will receive it every six months. Also, I know you’re worried about PML, but from the research I’ve done, what I can gather is pretty much the majority of Immuno suppressed people are at risk to some degree. Whilst it’s important the risk of PML is monitored, it’s also important you receive a preventative medicine to slow down the attacks from your immune system which can cause permanent damage. I’m confident too for you, please keep me posted as to how your infusion goes. You will gain confidence once you’ve had your first infusion and come to realise you feel ok. Take care.
Looking really good. I need to get this treatment. My balance and walking is terrible. I hope it keeps going for you.
Rich. 👍
Hi Rich, thanks for your kind message.. I really appreciate it. I’m sorry to hear your balance and walking isn’t good, this is also what I struggle with the most. It’s not easy, I hope things improve for you.
@@NeilBradleyMS I hope you are still feeling good. Do you suffer with fatigue problems. I always have I’m on average spending 2 or 3 days in bed every week. Just wondering if you did how do you manage this horrible problem.
Rich.
Hi Rich, no I don't suffer from fatigue in the sense that people with MS do due to brain lesions. However, I do suffer from fatigue because it takes MASSIVE amounts of energy now, to do the simplest of things. I know this because for example, just walking up the stairs tires me out, where as before my illness I could run up the stairs two at a time and not even be out of breath. There no real solution to the problem as far as I know, apart from resting.
Thinking of you both😊
Thank you 🙏
Great! 😊
Thank you so much! 🙏
Yes!!!!!! 🙏
Thank Patrick, it's good to hear from you. How are you doing?
Wow that looked miraculous 🙏🏻has it lost efficacy over time? 😞xx
Hi there, the Rituximab is purely a preventative treatment, so it's design to target a specific part of the immune system and destroy it, so essentially suppressing that part of the immune system. Honestly, it's hard to say if it's working or not because certainly over the last few months I've been going down hill rapidly, and still continue to do so.
@@NeilBradleyMS they don’t seem to do a very efficacious job of continuity regarding treatment and following up 😓xxx
Glad to see you without your helper tools and moving better my neurological is so unpredictable which is one reason I have not been here for a while. I do play my games to distract me though. My friend who had MS died of Sepsis her because her body could not handle it the doctors kept saying she no longer had MS and then bounce back to it.
Hello Rick, it's really good to hear from you. I'm terribly sorry to hear about your friend that died, that's so sad.
Yes, it was nice getting around a little bit better when I took this video a few weeks ago. Unfortunately now, I seem to be returning to my 'norm' .. the pain is increasing and mobility dwindling yet again. Oh when will it ever end, I'm sure you ask yourself that question as well sometimes.
I hope you're doing ok Rick, take care now.
@@NeilBradleyMS Thank you for reply my friend passed away at least 2 years ago
I messed up and my reply was sent before I was done. Oh well now to remember all I was gonna say now. Yes I do ask me will it ever end. Lol
@@hotwaterintub1 Don't worry Rick, catching that send button happens to us all. I'm fortunate enough to have a Desktop computer PC (I actually recently built it myself) so I do a lot of my message responses on here. I find it much easier with the bigger screen, and keyboard to type on (rather than my phone). My vision isn't great anymore due to my condition or medication, one of the two so this way is much easier.
How are you doing generally anyhow?
@@NeilBradleyMS I am just living it I stopped going Drs because even with evidence they say "Nothing is wrong" Then I get the bill in the mail. Others hear the neurological in my voice. Sheesh life goes on and on. Lol
Wow that's excellent, well done you xxx
Thanks Dawn, hopefully this small improvement will last a while. I hope you’re ok xx
@@NeilBradleyMS yes I hope it lasts for you Neil. I'm doing ok thank you, things are progressing as expected, wish there was some treatment for this but nothing. Good luck to you Neil x
I’m so sorry to hear things are progressing 🙁 not the best news. Always here if you need to talk Dawn. 💕🙏
@@NeilBradleyMS thank you, that's so kind. I've felt very little empathy or compassion from medical profession tbh, I just feel bewildered and abandoned, but I'm sure I'll get over it. Thanks again for your kind words, means a lot. Take care x
@@dawniedawn7228 Thing is though Dawn, you shouldn't have to 'get over it' .. like you say you need some support and compassion from the medical profession, and to be treated like a real human being not just a patient with number. You have a very significant and scary condition (not wanting to worry you) but speaking to people that understand is what you need. I hope you know that Teresa and I are always here for you. If you don't mind me asking, have you had any new symptoms appear in recent weeks? xx
Hello Neil and Teresa I just wanted to check in with you (I know it has been awhile since you posed this video.) But I was just wondering how you have been doing? Neil I hope that treatment helped you to finally get some type of relief. I unfortunately am experiencing that my bone marrow transplant that (The bone marrow was from a non related donor not a family member.) I had the Bone Marrow transplant from a total stranger the date of my transplant was done on 5/13/15. This has been going on since 2018, but over time my issues have now gotten worse. I kept telling doctors that I was seeing different issues that I was and are experiencing but those doctors that I have seen never cared about my issues. I tryed to fight this myself which I am I have no one to really talk to about issues with a blood cancer. I just look up stuff on the internet to compare as to what I feel is going on. As far as I know my red blood cells are low, My CO2 (Air to breathe) is low also, The test called Mean Corpuscular Hemoglobin Concentration (MCHC) Is low, My lab for Red Cell Distribution is High. My breathing is being affected because of my low carbon dioxide that there is not enough their for my body to consume CO2 (fresh air) at times I have to step outside to get a fresh of breath air it does help me. I am tring to get my Leukemia Records sent to the Awsome Cancer Oncologist that got my Bonemarrow Transplant togther. I really need to see him if not I will have to go somewhere else that is close to home. The Cancer Oncologist is about an hour away that did my transplant. But my inusance has to except me to see him because he is an out of network provider, But there is a possibility that my health inurance will make an excption to see the out of Network Cancer Oncologist. I am praying that I will be able to see him because he would believe my issues that I have and are experiencing. If not I don't know what will happen going to a different Cancer Oncologist. But if that happens it happens. Please pray for myself to see the Cancer Oncologist because he is willing to see me because I had typed him a letter back in Nov. of 2021. What have have been experiencing and he repiled back to me in Feb. of 2022. He just needs to ok from my Family health care provider which he gave the email to the Transplant Dotor on 3/07/22 that I can see him it was sent to my health insurace to hopefully be approved. That I can be seen by him. I need all the prayers in the world. I will let you know the decision when I receive the letter if my health insurance will let me be seen by him. I think he is the only one who can help me figure out what is going on with my out of wack blood work. If not I will have to look at another health care facility to be seen by another Cancer Oncologist and hope that Doctor believes me. That is what is happing to me at this time. I wll not give up Leukmia will not be a part of my life again. My bone marrow transplant happened going on seven years ago, I am not ready to face a rjection of my bone marrow that I had recived. I wll fight my heart out. Please take care the bouth of you, I know Neil and same with me if you can't replie back to me it;s know problem or when ever you can. I and Logan are hope you both are going alright Take Care ❤ Amanda & Logan
Hi Amanda, it’s always nice to hear from you. I’m pleased to hear that on the whole you and Logan are doing well.
I am however sorry to read about your struggles with low test results, and Dr’s just not seem to be caring enough. I hear this about Dr’s all too often, but then like you say you do get the rare good one that really does seem empathic to your cause
As for me, I’m really not good.. I can barely take steps, I’m so weak it’s ridiculous. I watch other people from the seat inside my car (I’m currently waiting for Teresa doing some grocery shopping) and I think to myself they really don’t know how lucky they are, just being able to walk without pain and weakness. I’m really tiring of it all, everything is getting too difficult, all I seem to do is sit at my computer every day because that’s ALL I can seem to do.
Teresa is also suffering terribly with Arthritis, she’s recently had a steroid injection in her knee which seems to have helped though. I think we both need new bodies.
I really hope things start to look up for you Amanda, and you make some progress towards the Dr you need to see.
Sending you much love and healing thoughts. Take care. 🙏🦋
@@NeilBradleyMS Hello Neil (For some reason I did not get a notification that you messaged me back although I did see it and thumbed it up) But I wanted to tell you I am sorry to hear that you did not seem to get the relief of the treatment that you had received. I thought you were suppose to get the same treatment after so many weeks or months? To help Boost up your Immune System or Response? I hope it gets better for you. You know I wish that for you, Just don't ever give up keep fighting I know with have Tremendous Pain Symptoms. You just keep your Momentum up you have the Strength to get though this time. Is their anything that the doctors have though else of trying for you? As for myself I will up date you on my Leukemia issues that I am Anemic with other factors that a Blood Cancer can cause. I am Determined Leukemia is not going to invade my life again I am a fighter I will Defeat it again as to what ever is going on with myself. I just am waiting to either my Cancer Oncologist to see if I have will be able to see him again or if that fails (Which I hope it don't) but if it does I have found another Cancer Oncologist that is getting my Records also, I would not jeopardized my life not to get care. I hope you and Tersea take care ❤ - Amanda
You started ocrevus infusion? Neil
Yes Dee, the treatment I am on is called "Rituximab" but it is the same drug as Ocrevus under a different name.
I'm not allow the have Ocrevus because I no longer have an MS diagnosis, I am diagnosed with NMO so I have to have Rituximab.
Hiya neil did you have steroids just before the ocrevus ?
Hi Daniel, yes I had steroids 1 month ago over a course of three days at the hospital. As a rule usually after about 10 days I start to pick up, but this hasn't happened with the last few steroid infusions and I was rather loosing hope. However, I've never had Rituximab so close to a steroid infusion (within a month of each other) so I'm wondering if that has any bearing on it.