RITUXIMAB (AKA OCREVUS) DIARY: I was feeling ok, but then.. | NMO | MS | Chronic illness
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- čas přidán 8. 07. 2024
- Hello Everybody, I've recorded several videos clips from 11.07.2021 until 03.08.2021. In them, I try my best to explain how I'm feeling after having Rituximab treatment on 15.06.2021 (part 1) and 29.06.2021 (part 2). My hope is that somebody finds it useful.
If you wish, below you can skip to different clips by clicking the time link:
11-Jul-2021 - 00:00
12-Jul-2021 - 01:30
13-Jul-2021 - 03:16
14-Jul-2021 - 06:09
24-Jul-2021 - 08:31
01-Aug-2021 - 15:23
03-Aug-2021 - 19:03
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🤒 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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Hey dude. When you started introducing your friend on CZcams, I was like, “Hey, maybe that’ll be me.” And then it was! I must be psychic.
I am writing this from what I hope will be my final night at the rehab facility. I need to go home so badly, so I can start doing the things I did before I got sick a couple weeks ago. I had so much hope a week ago when I got here because I thought they would push me much harder than I push myself at home. But I haven’t done a damn thing with my legs yet, and they really haven’t pushed me very hard in any way. Mostly I sit around on my chair all day, often with wet shorts, because the staff here doesn’t seem to understand how condom catheters work. That alone is stressful enough to make this place almost useless.
I think you already know all my hope has turned into major disappointment. But it’s so much more than that, because I’ve taken so many steps backwards. Now whenever I get home again, I’ll have to work so hard just to try to catch up to where I was before this disaster. And as you may remember, I was already trying to catch up before arriving here because I had just spent a week in a hospital, with a urinary tract infection, kidney infection, and sepsis. I feel like if I can’t stand up before the warm season ends, I’ll never see another summer. I’m going to have to push myself so hard once I get back home.
But I’ve made a new friend: Heather. She also has MS, and interestingly she sees the neurologist I used to see, before I was fired by that neurologist. I just met Heather a couple days ago. We weren’t staying in the same wing, but she came over to my wing and we just started talking. It was easy because we are the only two people here who use power chairs, and we are both eerily skinny. (Well, I’m not so skinny now, but I was skin and bones a year ago.)
Although she and I have MS in common, as I think you know, I barely recognize MS as a legitimate illness anymore. My problem is arachnoiditis. And I just wonder if something other than MS is her real issue, too, because she is eerily skinny. I think she said she was able to stand up two years ago. I mean, she’s way skinnier than I am. Of course, I gained a lot of weight last summer when I stopped taking OxyContin. Because I could finally eat. So I did.
I plan on leaving here tomorrow, but I’m not sure how I’m gonna get home if they don’t pay for a taxi because I have no money. Before I leave, I want to try to film a little bit of footage with Heather. As skinny as I was a year ago, I don’t think I was anywhere near as skinny as she is right now. I’ve told her it scares me that she is so skinny. And she has several kids. I don’t know how she manages to take care of her kids.
If we interact as normal when I turn on the camera, that should make some good footage for an upcoming video.
Hey Ryan, nice to see you over here .. and ah ha you must have made it to the end of the video to notice your mention. I linked to your channel as well :)
I've kept very up-to-date with all of your posts within the community tab on your channel, so yes I'm well aware of everything that has happened to you. The only way I've been able to keep track of them all is by 'liking' by way of a thumbs up. I've also responded to a lot of them, including the one's whereby they've injured you. Pretty sure you've spotted them all, as you've hit the heart button.
It's such a shame that this rehabilitation centre has been a negative experience and has set you back a lot, I was really hoping it would be a turning point. I really can't understand why they haven't tried, or even attempted to strengthen your lower half. It just doesn't seem logical. And yes, I also think you've got to really push yourself when you return home, because we sure do want you around for next summer.
I'm really pleased to hear that you've made a new friend, Heather .. she sounds really nice and from what you've written it seems you've got a lot in common. Perhaps you can make sure before you leave you can both stay in touch by way of Facebook or exchange of phone numbers etc. It really does help to 'connect' with somebody with so much in common. She sounds really nice.
Yes, just switch the camera on .. and be yourselves, that would be so cool. In a way, that is how Teresa and I are, what you see is what you get. I would love to see some footage of you guys, that would be so cool. I'm wondering if Heather being so skinny is due to some kind of eating disorder. Or perhaps her meds make her want to not eat and her muscles are wasting. I'm currently very underweight, I don't mind sharing with you that my condition is having a very psychological effect on me in as much I'm loosing interest in food the worse I get.
I really look forward to seeing another video from you, but I do realise it not easy .. For me I just can't find the motivation, taking the footage and talking to the camera is the easy bit.
Anyways, lets hope you do manage to get home today .. I'll keep monitoring your channel community tab for update. Take it easy friend.
Here's hoping your home now, Ryan.
@@zan1158 i’ve been home for about 24 hours. I slept a whole bunch the last 24 hours.
@@zan1158 when I saw your user name, it immediately made me think of my physical therapist at the rehab facility. I don’t know if I actually ever knew his real name because I called him Z, which is his first initial. He goes by Z at the facility because his full name is very unlike most American names, as he is part Iraqi and part Jordanian. His English is fine, but he has a noticeable accent, which I probably never would’ve picked out. I probably would’ve thought he was European.
He wasn’t my PT for my last day at the facility, I guess because I changed wings for the last 24 hours or so. (That is, I had a different room for the last 24 hours, in a different wing of the facility from where I had been the previous week.) So I was glad to run into him when I was getting ready to leave yesterday. At that point I had thought maybe he was off yesterday because they had me work with a different PT yesterday, and because I was so focused during my last PT session that I never even looked around the PT gym while I was there. (Plus I see double, so looking around and identifying things is very difficult for me.)
Although I had a couple small spats with Z, both he and I quickly got over them, and I felt we had a good rapport. I felt like he was sad to see me go, as he knew I was supposed to stick around longer and he probably didn’t know about most of the stuff that made me want to leave. Although part of it was that they weren’t pushing me hard enough in PT, I never really got to explain to him the whole story. Hopefully he was able to detect that I didn’t change wings to escape him, as I didn’t. In fact, I’d still like to talk to him about that stuff, and possibly give him a chance to learn some things about why I was there and what my objectives were.
Basically they were having me work on my upper body, when I desperately needed to do work with my legs. Perhaps the upper body work would’ve been fine if my legs were strong enough for me to comfortably transfer from my couch to my power chair. But they are not strong enough to transfer like that, and my main goal was to strengthen my legs enough to make the transfer easy. This was very important to me, and maybe everything could’ve worked out if only I had been asked and treated like my objectives hold some weight. As miserable as my stay was, I might still contact some of the people who run the place and help them understand why I feel I was failed by the facility; that my objectives were most likely more important than their guesses.
I just want to say a little bit more about my new friend Heather. She weighs 88 lbs. I can’t remember what she said she weighed at her heaviest, but I know it was over 200 lbs. I’ve never even weighed over 190 lbs. Right now I weigh under 170. I only know because they are able to weigh patients from the hospital beds.
Oh my Neil, I am just speechless 😞 I feel so deeply for you…. Your pain is written all over your face and sadness in your eyes. I wish I could wave a magic wand and make everything better for you 💖 You are right, hope is what you have to hold onto. Also faith 🙏 I will be praying for you that things start to turn around for the better! Please keep us updated like you’ve been. Much love to you and Theresa ❤️
Thank you Kelly. ❤️
Never give up never surrender!
My heart goes out to you!! I will keep you in my thoughts and prayers!!
I'm sorry you are feeling so poorly. I hope you start feeling better soon. Prayers and big hugs for both of you..
You’re a beautiful man, Neil . Please stay positive and strong 💪
I’m dearly sorry for this down season you are in. I do pray for pain relief to come to you. It is so hard for you I am sure. Gentle hugs of compassion sent out to you.
Hi Neil…sending you gentle hugs 🤗
God bless you and I hope you get better.
Hi Neil-I have been unplugged for awhile. So grateful when you record your symptoms. My calf muscles into my feet are painful. Catching up with you and Teresa,sending you warmth and strength!!
Thank you Avril, and it's lovely to hear from you once again .. I've been wondering where you've been at, as it's been a while since we've chatted hasn't it.
I'm sorry to hear that you're having trouble with pain in your calf muscles, this can't be nice for you at all. I'm not sure if this is similar, but my ankles (and surrounding muscles etc) often feel like they need stretching, they can be so painful at times.
Hey Mate, sorry you are not feeling well. Tomorrow is another day and you'll face it with optimism because that's the way you roll.
You are a tremendous inspiration to thousands.
Thank you so much Bob.
Hi Neil. Merry Christmas! I've been missing your updates and I very much hope that everything improves for you.
All the best for more good days. Best wishes 🤗 Still living in hope too!
Neil I hope you're doing better. Big hugs to you and your sweet wife
Hi Gitte, I wish I could say that I was doing better, sadly not. How are you doing? Sending hugs to you from the both of us x
I haven't been online much lately but I have been wanting to check on you to see how you are. I'm praying for your healing I for the right information will cross your path that will help you. Much love to you and your wife.
In my thoughts and prayers ❤️🙏 so sorry for the pain you're going through right now ..send love to you both as always.. hoping you will soon get some relief ,and a good night's sleep 💕🌹❤️🙏
Oh dear Neil.
I have been wondering so much about you; had the sense you were unwell. The only way I am able to get through each tormented day is to surrender myself to the will of the Father in Heaven who has all things planned for each and every one of us, whatever that may be, because we only have control over our lives in a small way, and it's such a short life here compared to eternity. Who knows when our time comes to get there, but we must each keep on until our day comes. You do that so well, for someone who suffers so. Thank you for sharing your experience, and may God's Love and Grace cover you and Teresa.
Please keep taking your phone and recording! It will keep your spirits up and we will be able to see you!
Happy Christmas to you and your family. Hope you are doing well. Have a great and happy new year. Lots of love Dawn xxx
Hey you! How lovely to hear from you, both Teresa and I hope you’re doing well too! I hope you’ve had a great Christmas Day, and we wish you much better health in the new year. Much love to you - Neil & Teresa xx
Hi Neil, thinking of you both. Hope you are keeping well. Happy Christmas xx
Neil my name is Kathleen and have followed your videos for I think close to two years. I initially did because your manner reminded me of my Uncle Bill who with my Dad was born in Liverpool though I am Canadian. I have MS and in my looking up MS found one of your videos with Theresa and felt an immediate warmth and desire to sit with a cuppa and visit with you both:). I have wondered how you are and just discovered how to make a comment as tech savvy I am not! It being nearly 3am here... 11am there I think you might see this. I thought I'd take a quick look to see if there was any new news of yours before turning off the light. I just watched your video and please know you and your Theresa are in my thoughts that you get some ease in your discomfort. I just discovered I can comment on this Amazon tablet. You are right re HOPE Neil. Take good care of one another! Just hug each other and know another person is holding you up in their prayers! Kathleen
Dear Kathleen, thank you so much for your beautiful comment .. and to say that you're not 'tech savvy' I think you did pretty well. I'm hoping that you spot this reply too! It makes both Teresa and I super happy that you felt so happy to watch one of our videos (or perhaps more), so thank you for that. I do hope your MS is not giving you too much trouble, and that you are managing it ok. Take care - Neil & Teresa. x
I am sorry, Neil. It is hard to stay strong and positive when nothing we try works. I got pissed at one of my doctors the other day, and told him nothing any of you doctors have done has helped me one bit!
Hi Cynthia, I can understand your frustration .. I often feel the same way when speaking to Dr's. I honestly and truly feel they unable to properly understand, unless they ACTUALLY spend a day in our bodies! That is what I always say.
Hiya Neil
Just sat here thinking not heard much from you and Teresa for a few weeks.Hope things arnt too bad for you.look after yourself x
Hi Michelle, we’re not too bad thank you .. just taking things day by day. Sorry for the lack of videos, I just don’t feel very motivated at the moment, pain and mobility isn’t great and hasn’t improved since my Rituximab treatment. I hope things are good with yourself? Thank you for the check in. Take care. Xx
Hello again, I don’t want to be a pest. Praying all is well. I want to wish you two Happy Holidays!
Jayne, please don't ever think you're being a pest! It's always lovely to hear from you. Thank you for your prayers and good wishes.. Happy holidays to you also. Take care.
Hi I stopped taking all my pain pills as I am no longer able to stand up. It helps having a fully reclining hospital bed in my home. Taking the pressure off of my spine. I was diagnosed with PPMS in 2009 I am 64 now. I have a commode 5" from my bed and even getting up to pee has me so tired I nap constantly.... I feel you
Hey there, thank you for taking the time to write this message and share your difficulties. I'm really sorry to hear how you're struggling so much, know that I totally understand!. I can only stay in bed for so many hours until I'm in so much pain I have to get up. Like you I may have to consider a hospital bed one day. How come you've stopped taking all you pain meds?
I kind of know where you're coming from though, I've too want to stop taking all my pain meds but I simply CANNOT .. the pain becomes so bad, and I become so miserable that I have to take them once again. I too, feel for you and you're in my thoughts.
Miss seeing you and Teresa. Hope you're at least a little ok. Hugs to both you.
We aren’t too bad thanks Patty. I hope you guys are well.
I hope you and Teresa are keeping well 🙏
Thanks Patrick, I've been better in all honesty. I hope you are doing well yourself.
@@NeilBradleyMS I’m glad u are okay . In all honesty I was a little worried about u because I haven’t heard from u .
I’m okay . I’m still struggling with sleep because of my Parkinson’s disease. Stiff muscles . It’s terrible but I am keeping positive and hopeful 💪 chilling with my cat and watching sci fi movies hehehe
Hi Patrick, good to hear you're ok on the whole despite everything you're having to deal with regarding your health. Bet your enjoying those sci-fi movies, and with your cat for company as well, how lovely. I'm a bit of a sci-fi buff myself, I keep watching Stargate Atlantis over and over again, hard to believe it's 17 years old now though but I just love it. Take care my friend.
I also meant to add that you've not heard from me, simply because I'm lacking motivation to do a video at the moment due to feeling so unwell really. I'm not giving up on my channel though, so don't worry.
@@NeilBradleyMS 😂 I’m so glad you are keeping well. I hope Teresa is keeping well too.
I’m a huge Star Trek fan especially the 90s the next generation series. I also love Stargaze the movie and the television series with Richard Anderson staring as Colonel O'Neill. I like watching those stuffs as it helps me forget about certain things. I’m generally a dreamer and I always have hope that things will get better one way or another. I also visit the woods when I can 🥰 I feel I’m in my natural habitat 🐵🍌 I’m an ape ooh ooh ah ah! You know the older and weaker I get the more I just want to be close to nature. I never get tired of it 🌳 it’s so beautiful 😍
Anyhow I look forward to your videos of your latest health progress soon. I also hope to see a really nice one of you and Teresa in Christmas 🎄 hehehe bye 👋🏽
So sorry I have not watched this until today, Aug. 24th, I have had pain for the last two weeks. I went to the ER and I was given morphine. I did help the ease the pain but of course that does not not last. I am finally better today and I wanted to see how you are doing. My husband and I ate keeping you and Teresa in our prayers.
Sorry things are not so good at the moment Neil. I absolutely know what you must feel like. Im secondary progressive, and struggle with incapacitating fatigue and really poor balance. I can still walk.....if thats what you call it...more of a lurch from one piece of furniture to the next,but so afraid the "sitting" days are getting closer!!. Try and keep positive. Not at all easy, but over the years I'm sure this is what has kept me going through it all. You can do it. Warm wishes💫 x
Hello Julie, I'm really sorry to hear that you're struggling so much and that this horrible condition has taken your mobility (pretty much). Those sitting days you talk about I think are upon me, but I'm having trouble accepting it, as I'm sure you would also. Take care x
Hope all is well with you two. 💕
Not too bad thanks Jayne 💕 Just taking things day by day. I hope you’re ok too.
Hi Neil,
Please just be aware that you could very well not know as my son has PVR from the TM and MS from 2016. He has never felt any change or change in flow etc even at 300ml retention, it was such a shock.
They are supposed to scan every 6 months for this but fat chance of that so we have no clue what is going on with his retention. The last scan was in 2019 and because he isn't on DMD'S he gets kicked to the kerb which just adds to the distress of this awful disease.
I am glad you are seeing some changes it all helps. But do keep in mind it can be silent the retention.
Take care both of you.
Hello Neil, it’s been 4 mos, I hope you are ok? You have been on my mind a lot. I pray always for you and Teresa. Please know I care.
Karen❤️
Hi Karen, I'd be lying if I said things were great.. we're just taking things day by day. Pain and mobility aren't good and I'm very tired of it all. Thank you for your kindness, and checking in with us. I hope you are doing well? I just haven't felt very motivated to do a video, but I may well do soon. Take care now. 💕
Neil my friend. Sorry to have not tuned in for so long I've been busy feeling sorry for myself. I really feel for you with the burning pain it is just horrible. I'm lucky that I have something that knocks me out at night called Clonazepam it's a epilepsy drug but it's amazing for me as I sleep.
I do hope you begin to get some relief soon as it sucks the life from you.
All the best for you and Theresa
Hi Adrian, please no apologies .. it's always nice to hear from you as and when you feel up to it. I know how unwell you are, and have a lot on your plate with you're own health. I too take Clonazepam at night, but I only take one tablet which is half a MG (500 Micrograms). If I take anymore it makes me too wobbly and I can barely stand at all. If you don't mind me asking how much do you have to take? Thanks mate, and take care.
I take 1.5 tablets but mine can be broken in half so probably 1.5mg and they knock me out but still wake if I need the toilet 👍
@@NeilBradleyMS Hi Neil Hope you are feeling a little better. I looked at my Clonazepam box and they are 2mg tablets and one and a half😱
Hello Neil hope you put a updated video soon!
I totally understand where you’re coming from. My MS is secondary and I now have Ataxia with it too (Damage to the Cerebellum from the MS)
Can’t walk (only a very tiny little with rollator, but a struggle)
My days consist of watching tv and CZcams or playing on phone. The frustration also makes me fed up, but I guess we have to find strength deep within 💪🥴
Hi Karen, I'm so sorry to hear this .. when you said your days consist of watching TV, CZcams and on your phone I could completely relate!. My days are very similar, but I am on my PC as it allows me to edit videos etc, and play an on line game I like. The point is though, our days consist of having to SIT, and no be up and mobile like we want to be, right? Yes, I too get very frustrated and I'm now finding there is a psychological component creeping in which I'm doing battle with. I'm trying to fight it off, but it's difficult. You take care, lovely to hear form you.💕
Happy New Year!!🎈🎊
Happy new year Jayne.
Hello Neil & Teresa I hope you are both well. I just wanted to see how you both are doing and I and Logan are wishing you a Happy Thanksgiving (If you Celebrate it. If not that's ok too) But I just wanted to say that I am thankful for knowing both of you. You both are so kind and thoughtful and I hope Neil you are doing good and strong. Teresa I hope you stared your Christmas 🎄 and decorations for the one and only Christmas. I am not prepared as of yet have things out for Thanksgiving for Tomorrow. But the Christmas 🎄 and decorations will be up in know time and then time to take them down again :(
I feel like it goes so fast. I know I have not heard from you both in awhile, But I just want you to know I Thankful for knowing both of you I know there are hard times and good times that you share and I thank you for letting me into you channel when I stumbled on it on you tube back when feels like for ever.
Happy Thanksgiving to you both and your family. Love you both, Take Care,
Amanda & Logan
Hi Amanda, nice to hear from you. Teresa sure has started Christmas, in fact I'm pretty sure she's finished wrapping presents already!
Health wise, I'm really struggling to be honest with loads of pain and mobility issues which just seems to be worsening on a daily basis. I try to stay upbeat, but it's difficult.
Happy Thank Giving to you also, I hope you and Logan have a good celebration and enjoy yourselves.
Take care - Neil & Teresa xxx
Greetings from Stockholm! Nice to see you again Neil :) Sorry to hear about how you’re feeling, the pain and all that. It was fun to hear about your passion for stargate atlantis. TV series help. You focus on other things. And games on the computer helps me a lot. Are you still playing Runescape? Is up late and playing Total War: Thrones of Britannia (Strategy game). Makes me focus.And a great history lesson. Some how it alleviates the pain. And the agony which the pain causes. I hope with all my heart that there will be more good days for you. You really deserve it.
Hi Mikael, oh yes Stargate Atlantis .. I’m really hoping to see a continuation of this now that Amazon have brought MGM Studios. There are lots of positive rumours amongst us sci-fi enthusiasts. As for RuneScape, yes still playing and as you say these computer games are good at distracting us from pain which, I have a significant amount of at the moment. Thank you for your kind words.
@@NeilBradleyMS Im going to the UK next week. For the first time. Birmingham. Meet a friend. And i will visit Wolverhamptom, Wallsal and so on. Allt the Black County History. A dream come true.
My heart goes out to you and I am sorry you're not experiencing any relief. It sucks. While I was watching your video my Molly started watching the birds so I took a couple of pictures of her. I don't know how to post them but maybe I can show you some time.
Hi Patty, and thank you for your message. Ahh bless her (Molly), I'm not sure you're able to post pictures on the CZcams threads as yet I'm afraid. Shame as I would have loved to see them. Take care.
Prayers for you. It’s hard to understand why there is no cure .🙏
Hate to see you suffering in these video clips, hope you find relief soon . I have found this heat unbearable recently with my walking and memory being the worst. How is your chest pain? Has that improved any? I just ask since you haven't mentioned it so I'm hoping that at least is giving you a bit of a break. Thinking of you and hope you feel better soon 🤗 as much as we feel it sometimes we are not alone, and are all fighting this horrible disease together, sending ❤️ to you and Teresa, take care!
Hi Lynda, and thanks for your lovely message. In answer to your question, my chest pain is always there in background, in fact just recently its been a little bit more noticeable but not too bad.
Oh Neil, I am sending healing thoughts, prayers, good karma, and magic pixie dust if it will help. I hope you get some relief soon.
Good morning Neil. I have been thinking of you. How are you feeling?
Hi there, ah that’s kind of you. In all honesty I’m not so good, lots of relentless pain and my mobility is up and down like a yo-yo, mainly down though. Thank you so much for asking. I hope things are ok with yourself?
@@NeilBradleyMS dang it! I am sorry that you are experiencing that still. Continuing to send thoughts, prayers, good karma and magic pixie dust. Keep advocating for yourself and looking for solutions!
Hi im so sorry to hear about how you’re feeling. My first thought is maybe take a break from your exercises you mentioned you keep doing and just rest even more as hard as it probably is but maybe your body needs in it dealing with the drug rebox amub?
Im obviously no dr just another ms er with similar experiences. I soon as i do feel better I overdo it and try to do everything I hadn’t been doing and then of course i crash again and my temporary hope crashes
But we get up or in our case lay down and rest rest and oh yae rest more and leave it up to our bodies to do healing . And keep doing the bare minimum things that bring our spirits up( like breakfast at tasco or sit in yard and look at the birds that come to visit ect
I don’t know i just wish I could help you you ms warrior you 👍🏽 your tenacity is a inspirational mate. Please let your body rest and give it a chance to heal itself too ( even more then you’ve been and maybe see if you notice any difference ?:)
Sending you and Tree heaps of love from bc🇨🇦
Thanks you for your kind words Mellie. It’s the same for me, as soon as I have a good day I over do it quite considerably, then pay the consequences.
Life can be a right bitch at times it's just not fair that you are suffering and in so much pain I really really hope that you can feel some relief and progress soon sending all my love and a great big hug X
Hi Neil, I’m sorry you’re not feeling great 😥. I’m new to your channel and receiving Ocrevus (Ocrelizumab) infusions for MS (5 years). I wanted to mention that Rituximab isn’t called Ocrevus, they are different products. Id love to know which one you’re receiving and I’ll watch your other videos in the meantime. Take care of yourself and I’ll send hugs and prayers your way 😊
Ahh thank you for your kind words. Yes there is a very slight difference between Ocrevus and Rituximab, but I think it’s only very minimal.
I’m receiving Rituximab, in fact I’ve only just recently had an infusion a couple of weeks ago which should last about a year or just over.
I hope you’re managing your symptoms ok.
Take care - Neil. 🙏
Living with chronic illness is just total sh*t isn’t it. People who don’t suffer just don’t understand how hard it is every single day just to get through the day by trying to function semi normally !! People mean well but they don’t live in our bodies :((
I’m so sorry Neil to hear that things are not good for you . I’m hoping and praying you find some improvement soon and that it’s a lasting improvement , no matter how small. I’m the same ,I get so happy when I see a glimmer of improvement but then I feel so fed up & disheartened when it’s temporary and I’m back to my limiting baseline health again !! Please Take care , say hi to Theresa . Try not doing exercise/gardening every day , I know you’re not doing much at all but it might be too much for your body , which might be making you feel worse the next day. I do gentle stretches & exercise / doing some chores every other day.
Also just as a suggestion try doing something different, for eg I went to our local library the other day , mootched around and borrowed some books . Ok I know it’s nothing major but it was just something different. Sending you a virtual hug & well wishes , Grace x
Thanks Grace, I couldn't have said it better myself .. people mean well but they don't live in our bodies. And yes, we get that glimmer of hope like somebody "throws you a bone" kind of thing, but then the next day we've reset to our baseline. Today I'm feeling very sorry for myself, this morning I got up as usual and just feel much worse. I took my first step and nearly fell over because my leg moved forward but somehow my foot dropped and didn't move. If it wasn't for my arms I would have been on the floor. Tiring of it all so much, it's no life.
@@NeilBradleyMS Oh no Neil thats awful , thank god you managed to save yourself from falling & getting injured , Ive had so many near misses as well :((((. No one would blame you for feeling down in the dumps , anyone would be if they were in the same situation. Its impossible and unrealistic to expect someone who is truly suffering to have a positive cheerie outlook all the time . I hope the universe gives us a break soon (fingers crossed hey). take it easy , and take good care
You dear man its ok not to be ok and let your emotions out.
Lack of sleep is torture and deffienty lowers your mood along with pain.
I took those tablets and they made no difference to me.hope you don't mind me asking but I think antidepressants would help your mood a bit and help you sleep.
I can see in your clips you feel like giving up but your strong 💪 you got this
Thanks Michelle, and yes there are time I do feel like giving up but my family and loved one ground me. Teresa thinks Anti-D's also are a good idea, I'm giving it some thought. Thank you, I'm trying to be strong but it very hard. x
Hi Neil,
Also to add a bit more to that if it hadn't been for me having my sons back here and researching absolutely every little thing abs advocating for him, he would have a) been left on Amitriptyline b) waited 9 months to see the community bladder and bowel service the nurse told me, for him to be seen by continence nurse to start intermittent catheterization on him, all the while still on the goddame drug causing the problems.
I utterly despair seriously with a lot of the clinicians in my sons care and its downright blooming scary to give a patients drug which is known to cause PVR or worsen it.
Patients need to know their stuff to protect their health and/or their loved ones need to research to challenge these clinicians therefore hopefully getting a better outcome not a bloody worse one.
God bless stay safe xx
Hugs my friend! You've been on my mind. I was hoping you'd feel better. I am sorry you don't. I have sort of similar situation here. My doctor prescribed Baclofen for my pain and spasms. The first dose was magical. I felt GREAT the next day. NO pain which was incredible. I'd not have a painfree day in years. Of course, I could not sleep that night. I did not take a second dose because it wrecked my sleep and the pain returned with a vengeance even while I was taking it. I do so understand feeling that listless sort of hopeless feeling. You can tell it's going to turn again and you just hope it will not last very long before you feel at least a little better. I'm glad to see you. I am so sorry you are having such a rough go. You are not alone! You've got so many who love you (count me as one). Hug Theresa for me. I hope things turn around for you soon!
Thanks J, you're so kind .. I can't remember a day without pain, it's rare. It's so sad when you're counting down the time for the next set of pain killers, but that is what I do now. No quality of life. x
@@NeilBradleyMS I seriously don't see it as living. It is existing. Hugs to you both
It is exactly that, an existence. I felt like that for quite some time now.
@@NeilBradleyMS I am there as well. It is hard to look forward to things when you are just hoping to have a day where you feel somewhat good. Normal has stopped being normal and not quite rotten is now normal.
I couldn’t have said it better myself.
pain releif should lower pain, tightness and anxiety which will effect gait. imo
U Teresa be well coming from Connecticut USA
Hi Neil, I too rewatch the same 100 episode TV series over and over (called Jane the Virgin) because I love it so much and it helps me cope with MS. Whatever it takes, right? Love to you and Teresa from Michigan 😊🥰
Hi LW, yes what ever it takes .. I'm pleased to hear somebody else does the same thing. Much love. 💕🙏
Sending youheaps of love
Yknow how hard it can be
Please try and find /do hower small the things that bring you feel good moments
Have you option to see different neurologist.
I feel so much for where you’re at in moment. Oh great you had nice breakfast at Tasxo 😁👍🏽
And your getting more moving about…. I admire your strength in dealing with the uncertainty and pain ect but you often seem to smile as you deal with it all
So sorry your not feeling goot at all really, i send you both heaps of love and strength to carry on Continuous prayers that you feel better 😁🙏🏻👍🏽😊💕
Thank you so much Mellie, much love to you also.
Hi Neil and Teresa
It’s been a bit since we’ve heard from you. Hopefully all has improved with you both. Exhaustion…. I have this painted piece which says how I feel more often than not…“I am not an early bird or a night owl. I am some form of a permanently exhausted pigeon.” Like you, I love my gardening and have done minimal this year due to pain, exhaustion
We care and hope to hear from you soon😘
Hello there, and thanks for checking in. In all honesty I’m not great and just taking things day by day. Im just lacking motivation to do a video, but still monitoring my channel daily for messages. I can totally relate to that pigeon you mentioned, I too feel the same pretty much from the moment I get out of bed in a morning. Yes the garden, oh the garden .. I’m truly sorry to say it has now become more of a chore than a hobby. I never thought I’d hear myself saying that, but sadly there it is. Everything is just so difficult due to pain and weakness which, I’m sure you also can relate too. It’s lovely to hear from you.
It is so very frustrating to not have the ability to do as I once could but am grateful to have had those wonderful gifts and talents to create beauty in my yard to share with friends, family and nature itself. I’m sure Cedric and friends are most pleased and greatful for what you have provided for them😘
Awwwww so sorry you're suffering Neil,i get burning sensations in underneath my heels,wakes me up every night,so uncomfortable, have no idea what it is,GP doesn't seem concerned so what can ya do. I still have no proper diagnosis,very frustrating. What is your diagnosis,do you have ms? I remember you saying they didnt think it was in the end. Hope you feel better soon Neil x
It sounds like nerve pain of some description to me Dawn, and if it's so painful it's waking you every night it might be time to say to your GP you want referring to the hospital for further investigations. I'm on my 3rd diagnosis now, long story short I was diagnosed with Transverse Myelitis from 2007 - 2013, then MS until mid 2019 and now NMO (Neuromyelitis Optica). You can think of NMO of like a severe form of MS, like a branch off of the MS condition. In all honesty, I'm quickly forming the conclusion that they don't really know, but then I don't think science has all the answers.
Yes I've been in your position with no diagnosis and it is indeed very frustrating. I remember it took just over a year to get an MS diagnosis for me. Hang in there, but keep pushing them. xx
@@NeilBradleyMS my symptoms started in Dec 2019 with drop foot,10 months later I was in a wheelchair, now I'm unable to stand or walk at all,arms are getting weaker. GP did an urgent referral to neurology back in June, my appt is December, crazy. I told em I'll be like Stephen Hawking by then. I hope you're feeling better, I love your videos, You're very calming and brave.
Hi Neil, haven't seen you & the "Big T" in a while. Covid spun me into a different existence & presently I'm in the process of moving from NYC to PA. Will feel more comfortable, safer there, I think. Last I saw you, you were feeling better & I was praying for a recovery. I'm so sorry for the pain you're experiencing, Your face looks a bit "puffy" in this video. Is it from the Rutaximab? Prayers to you and your good wife.
Hello Zan, nice to hear from you. I hope your move goes smoothly, and that once you're settle you do feel safer. You're right, my face is puffy but that is down to a side effect of Prednisolone steroids I'm having to take every day. It's certainly not due to me being over weight (I'm 10st and 6ft 2"), in fact I'm loosing weight because I'm loosing interest in eating too, no doubt down to a psychological component with my illness. Take care.
Neil, hello! Hope yr feeling a tad better since you recorded this. Blimey, it really is a shocker sometimes and the worse part is, there's no one tto blame! My legs completely gave out on me today (the little buggers!) And I got stuck in a cupboard for a good fifteen minutes before I could work out how to extricate myself! I'm back on youtube now so will be looking in on you and Teresa and the birdlife! Ps what software do you use for editing? I've got Logitech Capture which is well wobbly, and so I downloaded OBS but it's not that user friendly - but at least it actually works! Pps I've used amitriptiline on and off for years, I find it pretty good for headaches!!
Oh my goodness! Carol !! When the notification came through with your message I said to Teresa that's Carol “Ceedsie” and we were so happy to hear from you. Your channel 'vanished' from CZcams must be over a year ago now, I spent a lot of time searching social media for you, CZcams and Facebook but couldn't find you anywhere, we were very worried to say the least. So now I realised what happened to you, you've been stuck in that cupboard all this time!! :)
Unfortunately I'm not great to be honest, and quite a lot has happened over the last 18 months to 2 years. I'm not sure how up-to-date you are but long story short after seeing a professor of Neurology I've been re-diagnosed with a condition called Neuromyelitis Optica (NMO), the way I see this is kind of a 'branch off' of MS, but on a severe and painful side. I've documented it all in past videos should you get chance to watch.
As for video editing I use some absolutely brilliant FREE software which does everything I need and so much more, it's called “DaVinci Resolve” strange name I know but seriously try it out. If you go on to CZcams and just search for “DaVinci Resolve tutorial” it will get you started and I'm confident you won't look back.
As for the Amytriptyline, I think it's helping me sleep a bit better but it's doing nothing for the nerve pain to be honest. I think I need to speak to the Dr and double my dose to see if anything positive happens.
It's really great to have you back on CZcams Carol, how have things been with you, have you been keeping well yourself? (within reason).
Take Care - Neil & Teresa.
Hey Neil, hope you improve soon. I've been using amitriptyline for about a yr and half, I don't know about u but I feel like it keeps me awake than making me drowsy also I came off it bout 2 months ago but I started to develop chest pains and breathing problems. I told my MS nurse the symptoms and she basically said I have the MS Hug so I'm back on them now hope it's helping you out more than it is for me much love John.
Thanks John, I've been taking Amitriptyline now for just over a week and I do actually feel it's helping a little bit by way of sleep. I seem to be sleeping for longer which is in fact doing me good. At low doses it's actually a nerve pain killer so I can see why your MS nurse said it's the hug after you stopped taking it. You can never be too careful with chest pain though, so if you're still worried make sure you get checked out.
@@NeilBradleyMS no worries Neil, yea I'm currently on 20MG and tbf I am sleeping and it has help ease the chest pains. It's weird how coming off tablets creates a new symptom but it's all good keep up the good work 👍
glad to hear improvements. don't be like me and over analyse good things.
I always over analyse thing Tom ha ha.
Do they offer physical therapy as part of your medical treatment? I’m glad you have good moments. If you want me to, I can pray on your behalf. I think hope and bits of relief even while we accept our new normal, and human connections may give us enough strength of Spirit to not give up. I can pray if you believe it makes a difference. We are still here aren’t we, and we matter. May God in His Mercy, keep You.
Hi there, I've been down the Neuro Physical Therapy route and unfortunately it didn't really have any positive effect. I learn a lot from it though, and even to this day I try and continue with some of the exercises they taught me, when I'm feeling up to it and strong enough.
I thank you for your prayers 🙏
🥲🙏🤗 I do not you and i am Miles away from you , but i pray for you , i cry for you and i hope , and i believe you will be little bit better 🤗🙏
Ahh blessings to you, that’s very kind 💕🙏
@@NeilBradleyMS 🤗🥰🙏
Have you checked in to the Ketogenic diet in regards to improving MS symptoms. If you search CZcams for Keto Diet and MS quite a number of videos pop up. Diet can play a powerful role. It's probably worth a try.
Hello you two. How are you getting on? I try to keep up on here but I do get to check in on Facebook every morning at 3.00am!!! Oh to have a good nights sleep eh! I think half my trouble is side effects of medication. I hope you are getting some relief of the pain you are going through right now. Urgent message for Teresa...… It will soon be Christmas!😁😁 I hope you are managing to go Christmas shopping. ( Don't roll your eyes Neil 😂😂) Hoping to hear from you soon. It just seems like going around in circles and I hope that you can at least get some respite from all of this, if just for a day or two. Cheers, Mark
Hi Mark, good to hear from you .. Thanks for that, my dear wife really doesn’t need any more encouragement for Christmas 🥱 She’s already been playing Christmas songs whilst pottering in the kitchen. Yes the side effects of medication can indeed keep you awake at night, especially things like steroids which I’m still on, but hoping to come off soon. Unfortunately I’m not doing great, I was hoping after my recent Rituximab infusion I would be feeling somewhat better, but I’m afraid not. So, just taking each day as it comes. Cheers - Neil.
Hi We have been away from our home for almost a month because of hurricane Ida And I haven't been able to check in in a while. I come back and unless I'm overlooking it there's no new video and I was concerned about you. I hope you're doing okay I know everyone hopes to hear from you soon
Hello, that’s so kind of you to check in on us. We’re not doing so good in all honesty, apart from the usual pain and mobility problems, both Teresa and I seem to have acquired the cold virus from hell. We’ve been quite unwell with it for a good week to ten days now.
Wow I’m sorry to hear that you’ve been evicted from your home because of the hurricane. I do hope there has been no damage, and that you and your family are well.
I’m afraid I’ve just not felt like doing a video recently, I’m just lacking motivation. I know it’s been a while, we may well put something together at some point soon.
Take care.
@@NeilBradleyMS No it's totally fine you take your time and get well. I'm so sorry you and Teresa have been sick on top of everything else. You both are in my prayers. Unfortunately our house has been damaged to the point that probably going to be totaled by the insurance but it was not flattened like a lot of our neighbors so we still have our contents to at least most of them, the things that did not get wet. At this point we're waiting on insurance adjuster and see what we will be able to do with that to get into a new house on our land. At this point everything is wait and see but I'm not worried God has always taken care of us. I pray blessings and God's favor on you and Teresa And thank you for answering and letting us know how you're doing. 💙
Thank you, and we very much hope you get your new house 🏠 soon. 🙏
Hi, I don't know if you will see this, just letting you know that I'm thinking of you and Teresa and hope you are doing ok ♥️🤗
Hi Lynda, oh yes we are always monitoring the channel for comments. Thank you Lynda, for your kind thoughts and checking in with us. I’ve been better in all honesty, just keep taking things day by day, lots of pain and mobility problems as per usual. I hope things are ok with yourself. 💕🙏
It is not good to be feeling fine then zap it is still here. It happens a lot but life goes on.
It no sure does Rick, hope you’re not too bad.
I do the never ending loop with ‘All creatures Great & Small’ ☺️I hope you’re doing okay 🙏🏻 I’m still struggling, I’ve tried to add you on Facebook recently xx
Hey there, I remember watching that lovely program when I was young, long time ago now. I'm sorry to hear you're struggling. I'm not a big Facebook user, so I might have missed your friend request, my apologies. Please send me another request, and I will make sure I take a look.
Hi Neil , just thought I'd drop you a quick line to see how you're getting on ?? How's your health been, hope you're doing alright , have you noticed any improvement with being on rituxmab ? , hope you & Teresa are both ok , Love Grace x
Hi there, thanks for checking in that’s kind of you. Both Teresa and I have colds and chest infections at the moment (not covid as we’ve tested). And to top that we both seem to acquired conjunctivitis. Ho hum .. unfortunately I’m not doing so well and whilst the Rituximab is a preventative medicine, I haven’t improved with either pain or mobility. I hope all is well with you Grace. Much love from Teresa and myself. x
@@NeilBradleyMS Hi Neil , i’m sorry to hear that ritiximab hasn’t shown any significant effects. Im pretty much the same (good & bad days ) trying to get through the day the best as possible. I need to do more exercise but can’t find the motivation :(
Fingers crossed you both get over the colds /chest infection soon , take care of each other , Grace
Thanks Grace, I’m sorry also that you’re not feeling so good. I REALLY know what you mean with regard to needing to exercise but lacking the motivation. For me it’s because I just feel so tired all the time from the weakness. You take care now. 💕🙏
Hi Neil and Teresa. I just was thinking about you two. I hope you are okay. ❤️
Hi Amber, we’ve been better if I’m honest. Just taking things day by day. How are you? 💕
@@NeilBradleyMS I’m sorry. You have really been struggling for quite some time now. I can imagine it’s very exhausting. I hope so much that your doctors can find a solution to help with your pain at least. I’m sure Teresa worries about you a lot and I know she has her own health issues to deal with as well. I’m okay. Thank you for asking. Please take care, as much as you can.
Thanks Amber, that’s kind of you. The only thing I’ve discovered that helps take the edge of the pain and consequently helps with mobility, is Oramorph (aka Morphine). But they won’t prescribe enough, and I suppose I can understand that in a way as it can be abused. This morning is bad, I’m really struggling but I’ve just got to tough it out I suppose. Good to hear you are well. It’s very hard to comprehend this is what my life has become especially as ten years ago I was at full power with no real issues. Take care.
@@NeilBradleyMS Hi Neil, You crossed my mind today, so I thought I'd check your responses to some of your subscribers questions, in order to avoid redundancy.
Amber has done what I was going to do, so I thought I'd jump into this thread, between you two, if it is not out of line?
You're not alone. I know that I may not be of any help and I try to avoid the 'Misery Loves company' but for me physical pain and mobility grinds me down mentally. I find myself in disbelief at times about my condition.
I do my best to distract myself, but M.S. is stalking me.
I watch CNN and Netflix, but a few T.V. personalities recently disclosed their battles with M.S., John King. a U.S. CNN News presenter, and two actors, Christina Applegate, and Selma Blair. The latter who made a documentary about her life with M.S. called "Introducing Selma Blair"
I'm rambling...However, I did want to mention, based on your comments about pain and your treatment a cautionary note. It is one I have experienced and I have found out is quite common with opioid pain meds. No it's not increased tolerance, or addiction which are both concerning, but a phenomenon known as "Opioid-Induced Hyperalgesia" whereby the use of morphine based drugs, chemically alters neuro-pathways and makes one more susceptible and sensitive to pain. In essence the medication, used regularly, lowers one's pain threshold. Oh the cruelty of it all. I don't want to be an alarmist, so I won't leave links to articles etc. You can google it if interested. It happened to me a few years into my journey, long ago. My Robust pain threshold was brought down to pain when encountering cool breeze.
At any rate, our collective journey continues Mate. All the Best to you and Teresa this Halloween. Ciao, Ciao, for now.
Hello John, it's great to hear from you .. I hope you are doing as well as can be. My apologies for the delay in replying, Teresa my wife hasn't been well and has recently been hospitalised. I'm pleased to say she's now back home with me recovering now and moving in the right direction.
Thank you very much for your email, and information about "Opioid-Induced Hyperalgesia" .. yes, I've heard of this but haven't really researched it which, I'm going to do. I also feel I've experienced it too, because when I run out of the Oramorph (it's the only thing I've found that really seems to help take the 'edge') the pain definitely seems to exacerbate before calming down again a few days later. It's so difficult to know what to do sometimes, whether to take the pain relief or not.
All the best - Neil.
Neil, I will keep you in my prayers; today and always!
Have you been tested for AQP4 auto antibody? It is one of the most sensitive tests for NMO. It’s checked for in the blood.
I listened to most of your recent videos but I am not sure if you were ever offered that test or not.
All my best is coming your way and your wife’s way! 🙏🏻💗
I just realized from the comments that you tested negative, so please disregard my original question. My bad! Have they tested your CSF as well for AQP4 or MOG?
Hi, that’s ok and yes they’ve tested me for just about everything and I’ve come back negative. They were blood tests, but I also had a Lumbar Puncture back in Feb 2019 where they tested O-Bands, also negative. I’m considered Seronegative NMO which I believe is the correct term. In other words got all the classic symptoms but all tests are negative. It can be seen as like a branch off of MS that science is attempting to understand. Best to you also 🙏💕
Thank you for your reply.
I know they very rarely test for AQP4 in the cerebrospinal fluid. Specifically when one tests negative in the regular blood test.
I read a study that said that 3 out of 53 seronegative AQP4 tested positive in the CSF. That’s why I was curious whether they actually tested your spinal fluid as well.
Than you! 🙏🏻
Nice to hear back from you, and you’re most welcome. 🙏
Likewise!
Sorry if I perhaps misunderstood….so they did look for AQP4 in your spinal fluid and it was negative?
Thank you very much for your time!
Would it help to keep a journal? I have found that the weather and my diet play a big part in how I feel day to day. Jot down daily what you eat, drink, daily weather, exercise you did, then end your entry with pain level , and any other issues of the day.
Say hello to Teresa and know that I pray for you.
Hi Jayne, I've actually just started keeping a journal once again .. but I usually end up not keeping it up-to-date. So I decided that I would only update it when something significant happens either for better or worse (usually worse). I log thing like pain and mobility levels out of 10, and also have a section for taking notes. All done on my PC, with daily reminders set on my phone to update it if need be. Yes, I think it's a good idea .. I'm glad to hear you do it also. Take care.
Am ocreves also I think it's a nightmare . it's just a chemotherapy drug fancy up as MS Drug. I get horrible pain in legs and whole Back. Will try it another six months. MS is a nightmare. good luck Neil best wishes from Duane.
Thanks Duane.
Hey Neil Not heard much from you of late. Hope you are OK ?
I was told last week my MS is now secondary proggresive MS , I type of guessed this was the case : /
Hi Indie, nice to hear from you .. but I’m sorry to hear you’ve now progressed to secondary. I’m not good in all honesty, dealing with a lot of pain, mobility issues and new symptoms, it’s just never ending. We are hoping to do another video at some point, but I’m just lacking motivation. Take care.
My husband has been taking retux now-for 2 years, with the same result that you have gotten. NMO is a horrible disease. -Sending love to you and your wife.
Hi Stephanie, I don't believe we've spoken? I'm interested to know how your husband is and what symptoms he is also suffering, if and when you get a moment. It is in fact a very rare condition, so I don't know many people with NMO. I hope he is coping ok.
@@NeilBradleyMS
Neil,
Many of his symptoms are the same as yours:burning legs, unrelenting pain, (although his Dr. has tried many times, changing his pain meds), that usually works for a few days, then the pain is severe once again. He suffers from neurogenic bladder, and bowel, ridiculous fasciculations (at night), in his legs, and at some times his arms.
He has been in a wheelchair for 2 years, now, and although the retux. has slowed down the progression of the Neuromyelitis Optica, it has not stopped it, completely. Just two weeks ago, my youngest son and I, had to pick my husband off of the floor. He is 250+ lbs. Luckily, my son is 6’3 and 230 lbs., so we were able to lift him, without too much trouble; but the progression of the disease continues…
As a family, we are still trying to wrap our brains around this horrible disease. -He did not test positive for the Aquaporin-4, which has me very curious as to how this awful disease was set in to motion…Of course, that’s the billion dollar question, right?
To you and your wife, know that you are not alone, and that although NMO is very rare, indeed, there are others’ who absolutely know what you are going through…
Dear Stephanie, I'm lost for words .. know that I do understand not only the trauma your husband is suffering every moment of everyday, but also the effect it has on you and other loved ones. I don't really talk about it in my videos much, but I too suffer also with the things you mentioned, Neurogenic bladder, and bowel! But yes also the Fasciculations, and YES as you said IT'S ALWAYS AT NIGHT .. this drives me insane. It's like a slow torture as the twitches and muscles jerks don't let me sleep. As a rule it's always my left leg, but the twitching can be every 10 - 15 seconds, yes FOUR TIMES A MINTUES and it can carry on for HOURS. The only thing I've found which relieves this is for me to get up and move around (if possible) for about 10 - 15 mins. I'm not in a wheel chair, but I'm close at the moment, I really feel for your husband.
You might also be interested to heat that I also did NOT test positive for Aquaporin-4. I also had another blood test, it was to test for something like MOG Anitbody, that was also negative. But I have all the classic clinical symptoms etc, and I no longer fit into the MS category after so long, because I don't have any brain lesions, only spinal cord.
Please pass on our best wishes to your husband, he may well benefit from watching some of my more recent videos to show him that he's not alone with this terrible condition.
All the best - Neil & Teresa.
@@NeilBradleyMS -Thank you. We have watched the videos together. I know his condition is awful, I have wondered throughout this whole ordeal (along with many of his siblings), if his condition might not be NMO AND ALS…although, that is extremely rare, it IS possible to have both at the same time-
I did ocrevus on Monday
I'm so sorry what u going thru ...so ocrevus infusion not working
Hi Dee, early days yet but I've not noticed anything really positive as yet.
Hi Neil
How you and your lovely 🌲
Hope things may have eased up for you?
Well maybe for a day even .
Well big. Hugs to you both guys catch you soon I hope.🤗
Hello Bev, I’ve been better to be honest. Yesterday, for the first time in as long as I can remember I had a reasonable day, pain wise. But today it’s back with a vengeance.
Just thinking of you guys!
Hope your both ok Neil.
🤗
what could possibly help you sleep through pain or treat it better. If your sleep is crappy it wont help a darn thing. I stopped sleeping solidly and it has been a viscous cycle.
Blackbird Singing in the Dead of Night....................
Hi Neil I know how it is for you those days in the morning that you were out in the garden and you felt pretty good to go about your Moring and then I know you stared not feeling good with burning in legs and your back did the doctors give any indication as to why this is affecting you like this after the Rituximab
treatments you received? You said you are fully depleted with your Lymphocytes b cells cd 19 count. So what does that exactly mean for you? I know you spoke of your CD 19 is less tan the normal range (Your range 0.01 and normal range is 0.1 to 0.5) so with your range being at 0.01 should that range have not made a difference in your you function and mobility and pain or burning issues? I would have thought it would have made a difference for you I assume
that means that is a good thing for the depletion? But if so I don't understand how the depletion did not mean anything as to not helping your body? As to your weakness do you think it is from the medications or just that when your physically doing something let's say in your garden and your pain levels have been significant for and when you are done and are resting is that when you start to feel your burning or pain issues at rest? If that is so maybe you are over doing it when in gaged doing physical actives? And for your feet being swollen I don't believe what the nurse sated it could be from either I am with you on that one. Your feet are swollen can you still get your socks and shoes on your feet? You are retaining water in your feet and ankles for some reason? Try if you can do this prop you feet up to relieve to swelling maybe that will help relieve the swelling for you. I was at one time this year I was on Amitriptyline myself for head pain is was only on one a night 20mg but it did not work for my head pain so I don't take it any more. I sometimes also get up too in the night from pain and can't get back to sleep too. Tell Teresa I said Hi and you both take care ❤ Amanda & Logan
Hi Amanda, nice to hear from you. My B-Cell depletion means that the Rituximab has done it's job and is functioning correctly. With my CD19 count now less than 0.01 it will (hopefully) ensure there will be no more further (new) inflammation in my spinal cord.
However, during the transitional period from Azathioprine (my previous immunosuppressant) and going on to Rituximab, my immune system had to come back up to normal levels and hence the inflammation started up again. I think I'm still suffering from this inflammation in a big way and for some reason it hasn't subsided just yet, if ever it's going to. The Rituximab drug won't actually help heal me, but it will help stave off further inflammation, or it's meant to.
This morning (10.08.2021) I got up out of bed and pretty much fell straight away (my arms saved me), I went to move my leg forwards and my foot stay where it was. Today I seem even worse.
The weakness can't be due to physical activity because I spend more time sitting than actually doing anything. I literally haven't got the strength to do much gardening, I'm only kneeling down pulling out weeds as that's all I can do. Five minutes at most, then I'm resting for fifteen.
My feet have returned to normal now the very hot spell has gone, but I've never really experienced swollen feet before so I wonder what caused it.
Best to you both 💕
@@NeilBradleyMS Hello Neil, Good to hear from you that is great that your Immune System is back to normal for the most part. But it is strange as to why the Inflamation has not really escaped out of your spinal cord? I am going to do some research on or about that and why? On the date 10/08/2021 when you said you fell strait out of bed did you have any feeling what so ever in your body ( I understand if you don't know because it probly happened so fast.) Or a sensation?
Do you have or get any type of Numbness at all ? I dont really recall that you had numbess but just a thought. Did you ever try any type leg exercise's ( Nothing that will over exert you just light exercise. ) I don't know if you have any type of strengthing for your arms like light weights to help strengthen your arms? And I do know you would be setting to do leg and arm strength ( I know I would and should but I procrastinate doing it. ) I don't know if you would be able to get light type of weights for you're hands and maybe get some type of small cushiony ball and use it by setting and you could try it with or without shoes on take the little cushiony ball and place it or if you can't have Teresa put the little ball under one foot and just roll it around to your comfort amybe that arm strengthing with light type of weights and doing the soft type of ball under your foot (one at a time) just move your foot with the ball maybe that would help your legs to move better? I mean don't do it everyday because of getting use to it you could try it every couple of days? I don't know if I just made a Good Suggestions or not but It just came to my mind. You and Teresa Please Take Care,
Amanda & Logan
Hi Amanda, as always its lovely to hear from you. I really do appreciate your time, thoughts and effort which you put into writing messages.
I didn’t actually fall out of bed, but I almost fell upon standing when I first got out of bed that morning if you see what I mean. Fortunately though as always, my upperbody strength saved me.
With regard to exercising, to be honest and I’m probably wrong here, I’ve given up doing it. This is because I’ve been exercising on a regular basis pretty much every day for years in order to try and keep my muscles strong. But, I never seem to see any significant improvement, so I’ve kind of given up. I know that’s not a positive move but it’s just how I feel at the moment.
You may have misunderstood my last message slightly with regard to my immune system. At the moment the rituximab has successfully suppressed my immune system once again. However, before I could have the rituximab my immune system had to come back up to full strength after being on the Azathioprine, which also had my immune system is suppressed. It was a transitional thing between the two drugs. I hope that made sense.
Lovely to hear from you, I hope you and your son Logan are doing well. All the best - Neil.
@@NeilBradleyMS Yes Neil I understand if I recall you had to be off the Rituximab for a little while to transfer over on to the Azathioprine and as of right mow you are switched over onto Azathioprine if I am correct? I totally understand where you are coming from about doing Physically Therapy I am not a fan of doing it either. I don't get any benefit out of sound Physical Therapy. I hurt anyway before I would have to start doing it and the after affects I don't gain anything from it but more pain so I do know what you are talking about. With the inflammation in your back I don't know you were ever told but is it at one spot like the center of the spine or multiple places or were you ever told the inflammation is your whole spinal cord? I was not sure if your medical MS Nurse of your Doctor ever said or maybe they could not tell you other that the inflammation is just there? I understand how you fell kind of but caught your self thank God you were ok. When you almost fell did you have feeling or not? ( I understand if you can't remember cause when it happens it happens) I know you have been having trouble going to bed. Pain wakes me up too and when I am up for the day/night it could One in the morning and I am up no sleep for me. I hope you are in good spirits and you are feeling better today and hope Teresa is doing good too.
❤ Take Care - Amanda & Logan
Hi Amanda, it’s the other way around I was on a Azathioprine, and I have recently transitioned to rituximab, so rituximab is my current treatment which is infused every six months. Yes, I have inflammation in my spinal-cord.
Sorry Neil..take care…say hi to Teresa
The church I'm talking i would put u on prayers
Thank you.
You
How u doing
I'm not so good I'm afraid Dee, I hope you are doing better than I am. Take care.
Are you both ok?
Hi Pauline, not too bad thanks although I have to admit I’ve been better. I’m currently working on a video, so hoping to publish it perhaps next week sometime now. I hope all is well with yourself.
Hi Neil & Teresa, how are things? X
Hi There, good to hear from you. Things haven't been that good to be honest mobility and pain wise over the last few months. Also, over the two to three weeks both Teresa and I have had a terrible virus (chest infection/sore throat/cough/blocked ears) so we're still getting over that to be honest, we've both been on anti-biotics. Fortunately we're at the end of it now and starting to feel a bit better.
Whenever I walk I literally am wobbling and bumping into everything, it's not walking, it's stumbling. But this last 48 hours I seems to have improved slightly and I'm detecting a little more balance. The only thing I've been doing differently is some small 'core' exercises to try and strengthen my 'core' muscles. Amazingly I seem to be getting some good results, and I seem to have a tiny bit more balance. Usually these things don't last, but fingers crossed.. we shall see.
I know your health isn't good, how have you been getting on yourself?
@@NeilBradleyMS sorry for not replying sooner, just deflated by everything in life lately. Last month I've had an increase in lower back ache radiating into stomach, & on & off a feeling like I've been punched in the stomach & rumbling churning ( the churning has been going on over a year)A few weeks back one of my gp's decided to try me on mebeverine to see if it was IBS celiac crohn's etc , various blood tests and others , so far nothing conclusive, the mebeverine appeared to have improved somewhat but now this week I'm getting the swollen bloating sensations in gut and lower back. So much more too, and it seems so many symptoms and wierd patterns, no diagnosis no appointments everything seems to have stopped.
Last year I had 2nd opinion MRI and various tests in stoke , I've not heard from that neurologist for a year......☹ despite my gp & is writing, and I've been pushed back in the heart dept and ent useless left for months on end. And of course the dreadful covid situation. Hope you are both ok? Love to you both xx
@@justMe-rd4sw Hey there .. I'm really sorry to hear about these ongoing issues you're currently experiencing. I hope you managed to get to the bottom of it, or at least some medication to help control the symptoms.
We're doing ok, kind of .. although having said that Teresa has recently had a stay in hospital due to a chest infection (not covid) which exacerbated her Asthma. I was incredibly worried and scared for her. I'm happy to say though that although she's not better yet, she is getting there slowly. For me, I'm just taking everyday as it comes. Much love to you, take care. xx
@@NeilBradleyMS so sorry to hear that wishing Teresa the best and love and best wishes to you both also. XX
All the nerve pain of MS is so much fun. . . . NOT I see it in your face and eyes Neil. I had a friend with MS and she died of Sepsis her body couldn't handle. "Friends" stopped calling her and would not answer the phone, now two here have done that to me it is like they are punishing us for a central nervous system problem we can't change. It is not catch-able it is not leprosy. I will be praying for you.
Hey Rick, thanks for the message .. good to hear from you. The nerve pain is just the worse thing ever, mix in muscle weakness and you've got a recipe for disaster. Even as I'm typing this message to you my legs are 'screaming' nerve pain! The only thing I've found that give ME a tiny little bit of relief is Oramorph, basically liquid morphine, but it doesn't last long.
I hear what you're saying about friends, and I'm sorry this is happening to you.. but I do understand what you're saying. I think that perhaps they don't know how to be around us now, and can no longer do the things you always used to do. I don't know about you, but even venturing to the bottom of the garden absolutely wears me out, never mind about visiting and perhaps socialising for as little as an hour! Everything is also so painful, I'm constantly in severe PAIN pretty much 24/7, so it become very difficult for me to enjoy doing anything now.
Thank you for your prayers, I hope you are as well as can be.
Take care - Neil.
@@NeilBradleyMS You're welcome Neil when I feel not so good I stay home. Because I am afraid to go anywhere. God bless and keep you.
I know what you mean Rick, I too get afraid of going to places.. but I'm very lucky to have my wife who is always with me. But I hardly go out now because I'm just so immobile and my pain levels are always too high. Everything is just so damn difficult, probably like yourself I'm so tired of it all and ask a lot, why me!
@@NeilBradleyMS I am suddenly very tired oh this fatigue.
Your body is telling you to rest up Rick, don't fight it.
I wish I could do something for
Thanks Dee, I really do appreciate your thought but unfortunately there is nothing anybody can do. We just have to try and make the best of things don't we. I hope your new brace is helping you, an improves your quality of life.
@@NeilBradleyMS is uncomfortable but I get that I have to get used to it tomorrow I'm going to do nerve test on my legs last time I seen the doctor my left foot was swollen that was surprising for me when you put that your feet will swollen I'm getting that also and plus you know I use ocrevus tomorrow nerve test on my legs Thursday supposedly I have to do two MRIs in my back Monday I supposed to do doing infusion for MS their Church online going to talk to some leaders so they pray for you
@@NeilBradleyMS James 3:17 read that in the bible
@@NeilBradleyMS God could make u feel better get close to God talk too him
Perhaps so Dee, but he never does anything for me so I don’t ask anymore. I respect anyone’s belief system, but seriously why would God let us suffer like this in the first place.
Hi Neil how u doing today August 23, 2021ocrevus working for you
Not too bad thanks Dee.
@@NeilBradleyMS I'm not good were a braise
I’m sorry to hear that Dee.
Hi Neil. How's it going? Hope you're both doing well xxx
Hi Dawn, we aren’t too bad thanks.. just taking things day by day. No improvement with myself unfortunately. How’s things with yourself?
@@NeilBradleyMS oh sorry no improvement with you,can be so misserable can't it, you just feel so helpless. I had mri last week,brain and spine,hoping for some kind of diagnosis from that. I have appointment with neurologist on Thursday, so fingers crossed xxx
I hope you get somewhere, keeping my fingers crossed 🤞 for you too Xx
@@NeilBradleyMS just quick update. Neurologist thinks I have motor neurone disease, so I'm a little in shock,but one day at a time is all I can do really now. Hope you are doing ok. Ttfn xxx
Hello Dawn, Teresa spotted your post before me. Oh my gosh!! We are so terribly sorry to hear this. You say your Neuro “Thinks” you have this Motor neurone, is the diagnosis concrete, or are there still some more tests to be done do you know? Thank you so much for letting us know. 💕xxx
Neil, where are you? Are you still doing CZcams? Are you ok?
Hey there, I'm still here!! Just! Honestly, things aren't great at the moment, lots of pain and mobility issues. Focusing on just getting through each day.
Yes, I still monitor my channel and I haven't given up on it. I'm just lacking motivation at the moment due to feeling so unwell.
I really appreciate you checking in on me, how are you doing at the moment?
Sorry for late reply Neil. Tbh I just take one day at a time. So glad to hear you haven’t given up on the channel, I was starting to worry. I understand your going through a tough time and I can only offer good wishes as always and to feel better.
Thank you, I know that from our conversations we’ve had in the past you yourself are having a tough time also. Good wishes and better health to you too. 🙏
You need pain under control. I will mail you Fampyra. Ampyra. It works funny for me like spotty improvement but if you are a responder It May help.
That's why I write in FB messenger you have WhatsApp if you do let me know
Neil what ever came about your swollen feet?
Hi Paolo, the swollen feet subsided and returned to normal just after the very hot spell of weather in fact. So it could well have been that causing it, but the weird thing is I've never had swollen feet like this before so something has changed. All the best.
@@NeilBradleyMS that’s good to hear. I work in cardiovascular swelling feet is a sign of retaining water. The heart can play a role in that but yours went away so that’s great!
Thanks Paolo, yes this is what I was worried about (the heart and water retention) but ever since the hot weather vanished so did the swelling feet. So, I'm just going to monitor it and see if it happens again, that is if we get any more warm weather here in the UK lol. All the best friend.
Neil text me haven't spoken too you while u ok
Hi Dee, we aren’t too bad thank you. Just taking things day by day. My mobility and pain aren’t particularly good and Teresa hasn’t been well (short hospital stay) but is much better now. I hope you are doing ok, and managing symptoms ok. Take care.
@@NeilBradleyMS I'm so sorry is hard too get messages find them when you write show me how
I send u too pics fb messenger my braise
Ok Dee, I'll take a look thank you.