THIS COULD BE THE END OF THE ROAD: Will Rituximab help? | Neuromyelitis Optica | NMO | MS
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- čas přidán 5. 05. 2021
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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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Teresa is like wonder women.shes always smiling and chatty even when in pain.you have a great outlook on life girl.
Neil I think you look so much brighter .the memory thing is me
Hi Michelle, thank you for your kind words .. yes I do seem to be having a few memory issues at the moment where I can't seem to find the right words. I do however put it down to current pain meds. I tend to take something stronger at the weekends, and the memory thing 'seems' worse, maybe .. maybe not who knows.
I think Teresa is amazing, such a lovely person, you are so lucky to have her by your side❤️
Thank you so much for your kind words, yes indeed I do feel truly blessed to have Teresa by my side. 🙏
I'm sorry Neil, going thru this Teresa your rock be with you always god bless you
Hey Teresa and Neil, great to see you again!
I hope that Rituximab is going to help you.
It seems to be the last chance. it is definitely very aggressive.
But you will be taken excellent care of in the hospital.
They do have reclining chairs, beds and you can walk around if you
feel to it. The hospital I was in for my treatment with Chemo, when I was 20 years old,
odderef food, drinks and all the care you need when you are on such high risk drugs.
I hope everything is going to work for you! Teresa, you are a wonderful caretaker and wife to Neil!
Thanks for sharing this with us! Crossing my fingers for the treatment! Hugs, Britta
Hi Britta, nice to hear from you .. I hope you are keeping as well as can be. Yes I think it is pretty much the last thing they can offer me, so we are keeping our fingers crossed. I'm quite well known in the department where I'm having the treatment as it's the same one I go for Steroids. So I'm pretty sure I'll be very well looked after. Take care.
Neil and Teresa
Sorry it's been so long between communication with both of you. I'm so glad to see you have a solution finally. I'm so sorry she's having pain aswell. I've been on Ocrevus for 4 years now and I'm doing okay. I'm immune compromised B cells on a cellular level. It controls my attacks and if one starts the Ocrevus infusion stops it. Don't worry about how long the infusion is mine is 7 hours every 6 months. They do all the premeds too and steroids too. Dont worry my friend. After my Ocrevus infusion I feel better but I'm really immune compromised so I have to be careful. I think and hope you will be better and the Ocrevus had human DNA which sometimes can and has rebuilt what I lost. I am fortunate. I'm not all better but I'm able to function better than before Ocrevus. Good luck my friend. I think you will be pleasantly surprised that is my hope for you. My thoughts and prayers are with both of you. Please keep posting I really want to know you are both ok. May Angel's watch over both of you. Stay safe and be well. Take care. Peace.😇😊💕🤗
What a beautiful message, thank you so much for asking the Angel's to watch over us.. that means so much to both Teresa and I. I draw comfort from the fact that you feel better after your Ocrevus infusion. As you know I'm going to be having Rituximab but they're pretty much identical. At this precise moment in time I would be happy with as little as 5 - 10% better than I am at the moment. Like you I don't expect to be back to 100% or even 50%, just a little bit better and anything else is a bonus. Just to be able to move about a bit easier without so much pain would be lovely. Sending thoughts and prayer right back there to you my friend. Take care. 🙏💕
So glad to see you two back. Oh how I can relate with all this. Except I have the MS and hubby has the back, heart , hip, knee issues. What a team we make!
Sending hugs & prayers to both of you. Hang in there !
Hello Jayne, lovely to hear from you. Doesn't it sound like we are all falling to pieces? It's certainly no fun at all getting older is it. Sending thoughts & prayers right back there to both of you guys. Take care. xx
Missed you both too. Every sympathy with your back Teresa,been there, hope it gets better soon xxx
Hi there Dawn, how lovely to hear from you again. Thank you for your kind words, fortunately Teresa's back recovery is going in the right direction, she's still not there quite just yet but almost. We do hope you are well and doing ok. Take care now. xxx
Hello from Indiana USA. I'm so happy to find you both again with a recent update. Prayers and hugs to you both.
Hello Kathy, how lovely to hear from you. And, thank you for the Prayers. Hugs 🤗 to you also. 🙏💕
Great to see you both x
Great to hear from you Debrina, I hope all is well with yourself. Take care.
My heart goes out to you both. You're both in my thoughts and hope the new treatment works for you. Teresa hugs, back pain is horrible. Much love from Northern California.
Hi Patty, and thank you. I'm pleased to report that since making this video Teresa's back is feeling much better now and almost back to normal, she still keeps getting the odd twinge here and there though. And thank you, we really are hoping the treatment improves things and gives me a bit of quality of life back, I would be happy with just 5 - 10%. I hope all is well with yourself. Take care now.
Great to see you both back again. Sorry to hear you are in pain with your back Theresa ,it affects everything you do. Hope it improves soon your so funny hitting Neil's arm , accidentally though not once but twice ! Your a great couple always smiling no matter what life throws at you. Hope all goes well in your treatment Neil ,thanks for update best wishes to you both x😀
Thanks Marcella .. Teresa's back is now feeling a lot better fortunately, and ha ha yes my arm has recovered after a few days from my jab (it wasn't really that bad anyway). And thanks, I too am hoping this treatment works as there is not really much else they can offer me. Fingers crossed. Take care. x
Nice to see you both. Good luck with new medication. Best wishes 🤗
Thanks Nic.
Love and prayers for you both. 🙏🏼❤️
Hello Martha, how lovely to hear from you. I do hope this message finds you as well as can be. Much love and prayers to you also 🥰🙏
@@NeilBradleyMS thank you both.
Hope you are both feel better
Thanks Michelle, fingers are crossed. Teresa is also feeling much better now that her back is behaving itself. We hope all is well with yourself.
Great to see the update mate. Last time someone mentioned dangly white things hanging down from me, they were talking about my legs! Lol Keep smiling guys, we're all with you.
Hello Ed!! I had to think then for a minute, hmm "Dangly white things" and then I remembered saying about the wires on Teresa's TENS machine! I've just read your comment out to my wife and we both had a really good laugh 😂😂 Great to hear from you Ed, I hope you and the family are well.
God bless you both, you both are amazing and I can't wait for the next video.
Hey there, and thanks for your message we really appreciate your kind words. Footage for the next video is ready and waiting for me to get my finger out and edit it up. Hopefully won't be too long. I hope you're doing well.
Brilliant to see you both I'm keeping everything crossed that the new treatment works sending you loads of love and positivity take care X
Thank you so much Jackie, very much appreciated. I hope you are doing well. xx
Awww. You guys are so sweet..Theresa you are absolutely darling..🥰
Thank you so much Debbie, you’re very kind. 💕🙏
Its lovely to see you both. Fingers crossed the new medication helps you. Hope Teresa feels better soon , all the best , love Grace :) xx
Thank you so much Grace. xx
I have just found your channel and so pleased I did. You are both a really wonderful couple. so supportive of one another x. I do hope all is going well for you both, thank you for all your videos.
Hi Geri, thank you so much for your kind kind and supportive message.. both Teresa and I really appreciate it. We aren't too bad thank you, just taking every day as it comes. I'm so pleased to hear that you're enjoying our videos. I hope all is well with yourself, all the best to you. 🙏xx
Neil and Teresa it's great to see you two hamming it up for us considering the pain you both are dealing with. You guys are in my prayers and I believe better days are coming for you. Hugs to you both.
Thanks for that Robert, lets hope so.
Hi Neil and Teresa, it is so great to see and hear from you! I was actually thinking of the 2 of you the other day wondering how things are going. So sorry to hear Teresa that your back is not doing too well. Will be praying that it will start to feel better very soon!! You 2 have been through so much together that it has to get better!! Please do keep us posted when you get a chance. You both will be in my thoughts and prayers 🙏 Much love my friends💖 Kelly
Hello Kelly, lovely to hear from you as always. Thank you so much for your lovely message. Yes, Teresa's back now definitely seems to be on the mend, so that's good and thank you for asking. Really appreciate your thoughts and prayers, I really am hoping the new treatment will work even if it only improves my mobility 5 - 10%, anything else will be a bonus. I've learned not to get my hopes up though, I suppose only time will tell. Much love to you also 🙏💕 - Neil & Teresa.
I always enjoy watching your videos, thank you so much 😀
Hey there, well thank you so very much for your kind words.. they're very much appreciated. I hope all is well with yourself, take care.
It is good to see you. I will try to catch up on your videos. I’ve not been well and haven’t been on TikTok much lately.
Hey there I’m sorry to hear you’ve not been well, hopefully your on the mend now.
@@NeilBradleyMS I recently had surgery but I’m recovering well. Thank you so much.
Such a lovely couple you are. Praying for the both of you that your health would improve. God bless you!
Thank you so much, that’s very kind of you. 🙏💕
So lovely to see you both ...prayers and lots of hugs for you both 💕🙏..💕
Hey there, and thank you so much. 🥰🙏
@@NeilBradleyMS here's to the future ❤️
We can but hope that this last drug can help you. Sorry to Theresa for the bad back I know its not good at all. I must say your looking better even if your not feeling good. Fingers crossed for you my friend.
Thanks Adrian, appreciate your thoughts my friend. Teresa's back is now starting to feel a lot better, and she's getting around easier. I hope all is well with you, as I recall recently you've been going through it yourself. Take care.
Great to see you two back again 😊😊😊 I hope you’re back pain eases Teresa, and hope your new medication works too Neil. 👍😊
Thank you very much for that Ian, appreciate it. I hope all is well with yourself.
So good to see you both!❤️For what it’s worth, I think your long hair is beautiful. Sorry Teresa is not feeling
Well, my prayers are with you both. Hoping all your tests are normal 🙏🏻❤️
Thanks Karen, in fact I know of quite a few people that prefer my hair longer. For me though, I do like it short. At the time of shooting the video, Teresa's back wasn't good at all but fortunately now it has improved quite a bit, she's definitely on the mend. All the tests have come back normal, and I've now got my dates for the treatment but prior to that I actually have to go in and sign for it, something I've never had to do before. I hope all is well with you, take care.
I came across your videos by accident and I'm so glad I did. It's just like a check in with old friends and it feels so comfortable watching you both. I'm starting my journey but you have helped me massively. All the love and luck in the world for such a brilliant couple, watching you both feels like home ❤️
Thank you Lynda SO MUCH for this lovely, inspiring and uplifting message. Both Teresa and I are super pleased we have been able to help you in some way, and we are so thrilled you're enjoying our video. You take care now.
Hi! It's lovely to see you both again. This video really made my bad day better. I think the reson for why people find this channel helpful is the authentic content and braveness. I struggle very, very hard talking about my illness MS for my friends and family about the pain, depression, agony and so on. But I'm doing better and I think Neils story and how hi is communicating it have inspired me to do so.
Hi Mikael, lovely to hear from you and thank you so much for your kind words. You're right, it is very difficult communicating how your illness makes you feel to family and friends. It takes time and patience for sure and it really difficult to get people to understand. Some do better than others though. Also, I've found that with certain people I don't want them worrying about me, so I just keep things to myself. It's a fine balance isn't it. Take care.
Hello, Neil and Teresa. I was only wondering when your next video was going to be the other day and here we are! Wishing you both the best as ever. I really hope the rituximab works, Neil! Hope your bad back improves quickly, too, Teresa.
Hello Steve, and thanks for your kind message. Yes, the videos aren't as frequent as we would like, but hey here we are still. Teresa's back is feeling much better now and she's moving about easier, unfortunately I'm not and I'm moving about much worse since stopping my Azathioprine drug during this transitional process. But as you say, I am hoping Rituximab will improves things. Only time will tell I suppose. I hope all is well with yourself. Take care.
So so lovely to see you both.
I worry when I dont see you both
Hello Michelle, lovely to hear from you as always! Thank you for your kinds words, I know it's been a little while but we're still knocking around lol, and still very much active on the channel even if the video have slowed down a little. I do hope all is well with your good self, or as well as can be. Take care now.
It’s so nice to hear from you both ♥️ Teresa always so adorable and she reminds me of the little Pikachu pokemon 🥰
Hi Patrick, and thanks for the compliment about Teresa. I just read out your comment to her and we had a good chuckle about the Pikachu Pokemon 😂 I hope you are doing well my friend. Take care now.
@@NeilBradleyMS hi Neil . Thanks for the reply . I always hope that u are both doing well . Please don’t ever forget, u are not fighting this alone. We are all with u and Teresa 🦾♥️♥️ stay beautiful and positive and never give up !
Thanks so much for that Patrick, kind of you. 💪💕
Good to see both of you. Hope your back is feeling better, Theresa~
Thank you Cynthia, it's nice to hear from you. Teresa's back is now feeling a lot better, especially this last couple of days. It's taken a good month or two to get better again though, awkward things backs. I hope all is well with yourself.
@@NeilBradleyMS glad she is feeling better! I contacted another surgeon about my back, and I have an appointment with him in 2 weeks. I figure if I don't get some kind of news from the first one within that time, it is time to move on to someone else. His office does not keep me posted about how things are going as far as an appeal, and I am just frustrated. They don't see the progression that I see and feel everyday! I just feel in my gut that this is not my ms, but rather my disc herniation.
I do hope it is the disc rather than MS. Fingers crossed 🤞 for you.
So glad to hear from you two, was beginning to wonder if you were ok? I hope this new drug will give you what your after Neil. Keep positive or try at least, I know it’s harder said than done. Keep us updated plz. Sending you all good positive vibes. Take care
Hey Adele, you've changed your channel name :) Thank you so much, I know it's been a while since we did a video.. that's my fault as I'm just not feeling very motivated this last few months. I know you've had your fair share of problems recently (from recent conversations) so I hope also that you are managing ok. Sending some of those positive vibes right back there to you, take care.
Amazingly A Very
Beautiful Couple.
Wishing You Both
A Positive Year.
☀️🙏🏽😇🤔❣❣
Thank you Brenda 🙏💕
@@NeilBradleyMS
You’re most welcome.
Mr & Mrs. Brady.
It’s a great pleasure,
hearing & seeing
you both. ☀️😇🙏🏼💕💕
Hey you two!!!
So nice to see you again as you are thought about often and missed❣️ Prayers for much success and comfort with your treatment Neil and that “both” of you will get back to a better life without so much pain. God Bless. “E”
Hello "E" .. thank you so much for this. We are very much hoping the treatment will have the desired effect and give me some quality of life back, but I'm trying not to pin too much hope on it. When I've had Steroids, I've bounced back so many times only to be knocked down again months later. We shall have to see what happens, I'm going to try and keep the channel updated with a video when I have it done.
Stay positive my friend…Believe
Joshua 1:9
Have I not commanded you to be strong and courageous? Do not be afraid; do not be discouraged, for the LORD your God is with you
Thank you. 💕
Hey Neil and Tree. Thinking of you both and hope the retuximab is helpful.
Hey there, and thank you very much. Yes hopefully Rituximab will do something positive as I don't think there is anything else they can offer me. Take care.
The haircut looks great! I’ve been thinking about you two and wondering how you’re doing. I really hope the new treatment is effective and brings you relief. Also, I hope Teresa’s back has improved. Take care until next time. ❤️
Thanks for that Amber, really appreciate your thoughts. Yes Teresa's back has improved significantly since shooting the video which I'm pleased about. I hope all is well with yourself. Take care - Neil & Teresa. 💕🙏
Hi Neil and beautiful Teresa 🌟 good to see you again.. dear Neil I'm really hoping the new treatment is going to help.. Teresa you are so amazing supporting Neil ..I have noticed Neil you get brain fog or just blank ..I am experiencing the same I see the word but it just can't get out like a short circuit ..I'm not saying that the same for you but I found it interesting and I hope I haven't offended you.. what I'm trying to say with Teresa next to you helping you verbally when you ask is beautiful ..wish I had that 😊I'm still waiting for my treatment but I have now had my steroids Methylprednisolone about 3weeks ago .so getting better slowly other then the side effects.
Stay strong💪💪😘both of you are so motivational ..BY NOT GIVING UP. thanks for that please keep making bids 💞💖
Dear Gitte, how lovely to hear from you .. my apologies it's taken a few days to respond to your message, I tend to answer everybody so have to pace myself a little.
Of course I'm not offended, I do seem to be getting a bit of brain fog but I'm putting it down to certain pain medications (Morphine) I'm taking which is when it seems worst. I'm monitor myself very closely, as I'm not usually like that. Yes, Teresa does help me and prompt me during the video, I suppose I could cut those bits out but I deliberately leave them in to keep it real, I believe in showing people exactly how things are effecting me sort of thing
So, you've had your Steroid (Methylprednisolone) .. as you know by watching some of my previous video I've been there several times. As as rule I tend to feel a bit 'poo' for the first few days, and then pick up and start to feel better. So hopefully by now you are too.
Yes indeed, we will continue to keep making videos .. even if there is a few more weeks in between publishing.
You take care now Gitte, and I hope this message finds you as well as can be. Much love - Neil & Teresa. 💕🙏
I was wondering how you guys were doing. great to see an update.
When you have to go to the hospital, and be alone in there, we are with you!!!
I definitly hope that you will get better from the new treatment.
Are you a gamer Neil? What kind of games are your favorite :-)
Hey Lita, and thanks for your kind message. I suppose you could call me a gamer, but I only play one specific on-line game and it's called "Runescape". My wife and I have been playing this since 2007, it's just one of those never ending games with so many things to do. Quests, skilling, combat .. you name it it's all there. It's a good distraction also.
I am glad to see you. I am so sorry you are both not doing great. Please know I love you dearly. I miss you when you are quiet for a while BUT I understand. Do not pressure yourselves on our account. My MS has been bad lately. Balance is terrible. I feel sort of disjointed mentally. No stamina. Just over all yuck. Sleep has been awful too. So I completely understand the situation. I'm not as bad off but trust me, I do get it. Hugs for you both. I wish I could help!
Hello J, lovely to hear from you but I'm sorry to hear things aren't good at the moment. I can relate to all the things you mention in your message (as you know), and lately especially the balance and pain. I really hoping things will improve with this new treatment, I remain quietly hopeful.
I do hope things improve for you also, and you start to feel if not only a bit better, and very soon.
Take care now, sending much love and prayers - Neil & Teresa xxxx
@@NeilBradleyMS We must both remember we are not alone. AND science is busily researching. Might be there is something coming to help us both. We can hold on to that thought. Hugs and kisses to you both! Jacquie
It’s wonderful to see you both, and so glad to hear about the progress for you Neil. Hopefully it’ll work out for you, rituximab is very similar to Ocrevus in both how it works and the process of being treated plus the blood test before subsequent doses (I’ve had 5 now), so I can tell you from my experience with Ocrevus that it’ll be ok ☺️ the treatment is all day usually for me but it flys by! It’ll go by a lot faster than you’re anticipating. The antihistamine make you sleepy and is to help reduce infusion reactions (it’s diphenhydramine), so you may even sleep through a portion of it. I always do! 😂 and the hospitals are usually very good. They make things nice and comfortable and check on you regularly. My hospital usually has a very cheesy radio channel on, and you can always bring along a book to read or something else to do. You’ll be in good hands I’m sure ☺️ If you have any questions about it all I’m happy to share.
Glad to see that you’re both in good spirits, but I’m sorry to hear about Teresa’s bad back. I hope you feel better soon!
Sending lots of well wishes your way xxx
Hey Naomi, thank you so much for all of this information you provided. It really has made me feel more comfortable with the whole thing. Yes, I've heard the Antihistamine can make you tired so lets hope I manage to get a couple of hours kip whilst having the treatment. To be honest it's the same department I've been to called the Day Case Unit, and I've been that many times (to have Steroid infusions) several of the nurses know me, I get looked after really well. I'm going to take my iPad with me (and a charger lol).
Teresa's back is now almost completely better, still the odd twinge here and there though 'reminding' her to be careful.
You take care Naomi, as always it's lovely to hear from you. xxx
P.s I love watching your vids I have cuppa with my friends big hug to both of you
Hello Gitte, this comment makes us so happy to read.. not to mention it's messages such as your which inspire Teresa and I to keep producing content. So thank you. 💕🙏
When Mom had her chemo treatments they were all day too. But that hey had recliner chairs and a bed option and they could walk to the bathroom with their Iva on a trolley. They had refrigerator with juices and dry snacks and hot cocoa and coffee, even a puzzle table. Ask them what you can bring. Lots of folks bring a comfy blanket from home, iPads with books, movies and music. If you like darkness, bring an eye mask and ear plugs. I wish you well and I’ll be praying for you and Teresa back pain.
Thanks Michelle for all the tips .. I'm already gathering thoughts, it's probably going to be iPad, Snooze, iPad Snooze lol on repeat. Hopefully the day will go quickly. What makes things really difficult for me is I'm not able to move about easily because of my mobility problems, so that's a worry. But there will be plenty of nurses on hand to help where needed, in fact I've been to this department so many times (It's where I also have steroid infusions) they know me quite well. Teresa's back is feeling much better now, thank you for asking. We hope all is well with yourself. Take care.
You do not hold the truth of your situation back, Neil. I appreciate that, because it's a rare thing to be courageous enough to explain your concerns. And as for Teresa, it's horrible to even think that she is also not well, and in pain. I must say, everyone I know right now is suffering with something, either in their bodies or their minds. For some of us, the reality of our sufferings must just be something we face head on. But we are not alone. The LORD GOD is with us.
Thank you Elaine, for your kind words. Yes, this certainly is our reality .. and it's not one I'm particularly enjoying at the moment. Take care.
Neil you look like Jeremy Vine lolll..great to see you both.. my mum has Vasculitus and Rituximab Azathioprine etc are used for her desease. .I'm pleased your getting help and being seen.. Teresa, hope your back improves..Lots of love xx
Thanks Pauline, and yes I suppose I do look a bit like Jeremy Vine lol (I just Google him) Much love to you xx
I am 35 and I have been using a cane for 3 years : I struggle with heart failure and just come out of the hospital as I’ve been having hell with my spine - they’ve just found a suspicious lump that now needs some investigation- so I feel you’re pain both physically and emotionally, sending you both love from South Wales xx
Hey there, thanks for your message. I'm terribly sorry to hear you're struggling, and that they've found a suspicious lump. Hopefully this lump will turn out to be nothing! We really hope things improve for you, perhaps when this lump has been removed? Please feel free to keep us posted, take care. - Neil & Teresa xx
I am honored to be considered, one of your friends. Good to hear from you guys. So sorry with what you're dealing with Teresa. Chin up and what not. Carry on. I want my medal😂
Hey Lee, and thank you for your lovely message.. it's nice to hear from you too. Ohh, you must have made it to the end of the video and want that medal then lol. Take it easy friend.
Great to see you both, think of you most days ( always in my prayers 👍) I remember the phlegm man🤣.
I know EXACTLY what you mean regarding the anxiety of being alone in hospital, I feel the same, but you'll do it, we are stronger than we realise✊.
I always lose my thread, its when we have so much on our minds aswell as pain. I'd love to be able to do all the things I could do before, I was so active too, I was always gardening,walking doing stuff etc I really understand that.
Wishing you well with the treatment, so glad you have done the video, go for it!!!!
See what happens & don't give up hope, I know it's hard. You make me feel better because I feel less alone with my health issues.
Take care both, hope your back improves soon Theresa & Best of luck Neil, and try not to give up hope, if for any reason it doesn't work out, there are always other avenues and new medical treatments coming thick n fast esp due to massive investment in research in the big pharma companies, new gene treatments in the news all the time.🤞🤞🤞
Love to you both ✊💖 ( unfortunately I'm no further forward in finding out what's wrong)
Hey there, and nice to see that your message posted this time ha ha .. ahh and that's nice that you think of us, thank you so much for that. Yes, the anxiety is terrible and I'm going to miss Teresa not being there with me. As for Mr Phlegm man, for my Wife's sake I'm really hoping we do bump into him once again lol 😂.
Reading on through your message about being so very active, it was exactly the same for me too! I really miss my old life, almost pine for it. When I worked , on my lunch break I would walk around the beautiful park & lake, probably about 3 to 4 miles (I could walk so quickly). The gardening as well I could do the whole garden in like an afternoon, but now I can only do the tiniest little section and at the moment not even that. It's hard not to think about my 'old life', and I'm sure you probably feel the same way with regard to yourself. Know that your not alone though my friend, it's really hard looking back isn't it.
I'm so PLEASED we make you feel less alone with your health issues, this is one of the most important things to both Teresa and I when making a video. I made an attempt to get this point across in this video.
Teresa does read all the messages, she's not completely recovered with regard to her back but she's definitely on the right path now. She's not a very good patient though, I caught her the other day trying to lift something heavy. I gave her a sharp warning, nicely of course.
I do hope you are doing ok yourself, I know that things haven't been great with you when we've chatted in the past. Take care.
I’m so happy to see you two today. I have been thinking of you both a lot lately and hoping you are okay. Teresa really made me laugh when she said you could have gotten a perm🤣🤣 I’m so sorry you’re both having a rough go at this season of your life. You’re both always in my thoughts and prayers. I’m going through my own stuff. We found a large tumor on my spine between the L2 and L3 growing on the nerve that goes into my spine and seems to be growing into my spine. The disk is also herniated as well. Also have a bulge between L5 and L6. It’s been a struggle and I will have to have surgery. I’m a bit nervous about this one but I’m doing okay and my pain is being managed well at this point. I’m having my 2nd MRI on May 18th with contrast to get a better look. My right leg is weak and tends to go numb but if I’m really careful I can keep it from getting really bad...I’m so grateful for family as I see you are too. What would we ever do without them? I always say that no matter what we always have hope and hope is something we can believe in and be thankful for all the little things because those little things mean so much. So nice to hear from you two love birds. If I ever get the nerve to actually upload a video on here I will load one of the quail families I was telling you about. Every time I see them I think of you two because I know how much you love birds. Their babies are so cute. Take care and wishing you the best of luck on your injection. Sending bug hugs to you both🤗😊
Oh my goodness!! Both Teresa and I are so sorry to hear that you have these issues with your Spine. I've had a disc bulge myself (documented in first video) which they managed to fix, but we are so terribly sorry to hear about the tumor. Both Teresa and I pray the Dr's will successfully remove this for you, and this has to give you some relief from pain and mobility issues. As your name so beautifully suggests, when all else fails sometimes "hope" is all we have isn't it. I have to say I rely on hope an awful lot, especially at the moment. Just sitting here typing this message in my most comfortable computer chair, my back is becoming very sore, my legs are 'hissing' at me with nerve pain, basically pain everywhere. It's easier to say where I haven't got pain. I'm so tired of it all.
I would love to see a video if you were to upload to CZcams. If ever you decided to do this you'll have to le me know.. actually I've just been over to your channel and subscribed, you know .. just in case. :)
Well, you take care .. and I hope your MRI scan goes ok and we are keeping our fingers crossed for you. Take care and much love - Neil & Teresa xx
@@NeilBradleyMS Thank you! Looking forward to your update on your injection and praying you can get some relief from the nerve pain. I will be getting some spinal chord injections in the future so hoping to get a grip on my nerve pain as well. My spine doctor will be deadening the nerves linked to my neck and upper back. We start out minimal and then work accordingly after that to try and get relief. I am nervous but also looking forward to that one. I’ve seen some really good reviews from other patients so I’m pretty hopeful. Take care you two. Sending love and light back to ya💕
I really hope your treatment is uneventful and goes very well for you. More importantly gives you plenty of pain relief from it. 🤞 💕🙏
I've gone down the stairs on my rear twice the last couple of months..the second time " oh here we go again" still sore ..but this was taken away ...by my aunt having fatal fall down the stairs on the 20 th..I'm now extra extra careful 🤞🤞🤞🤞
Oh gosh, I'm terribly sorry to hear about your Aunt having a fall.. yes when we hear of such terrible things it really does highlight how careful we have to be doesn't it. I do hope she's recovering ok. I'm also troubled to hear you too have been having stair issues, please be extra careful. In a morning when I first descent the stairs, I can feel how weak my legs are and it would be so easy for me mis-judge and have an accident. I don't like to even think about it. Something we've taken for granted for so many years is suddenly very dangerous. Good to hear you're being extra careful, me too!!
@@NeilBradleyMS the fall for my aunt unfortunately was fatal instantly💔.. I don't know how I did it the first time ..so as you say we are extra careful... Still have bruises from the second ,but being extra careful now .. I did change my user name ..but hopefully my subs like yourself know it's me ..been around a while now .. I hope it's onwards and upwards for us all. Love n hugs for you both💪❤️
Hey Neil & Theresa how are you guys doing been a while hope things are ok .🤗 💞
Hi Bev, we’re both full of cold at the moment and it’s a pretty nasty one (chest infection, sore throat, the works). For me, mobility and pain wise still very bad I’m afraid to say, just taking things a day at a time. How are you?
Yes I agree with you about your body having inflammation when you have this treatment or treatments is it one time treatment if it works and if it works will the doctors possibly keep giving it to you of course in a couple weeks or months for maybe more treatments?
Yes I have been thinking think about you both lately it's good to hear from you don't apologize I total understand where your are coming from I feel like you are family to me I am praying that this treatment will work when are you having the treatment again? The treatment will work think positive about where you are right now in your life with all the issues and treatment that you have gone through their is light at the end of the tunnel this treatment is the golden ticket
And by the way so you know you looked like shaggy from Scooby Doo Cartoon if you know that cartoon but your hail cut looks 👍 Take care - Amanda
Hi Amanda, I'm going in for the treatment mid June, then I have to wait two weeks for the 'top up' this is all part of the course. They then monitor my blood monthly and when my immune system is showing signs of coming back up, the treatment will be repeated but I'm not expecting it to be more than twice a year. We really do hope it is the golden ticket, even if I only gained 5 - 10% strength and quality of life back I would be happy. And ha ha, yes I know the cartoon Scooby Doo lol ha ha thanks for that Amanda :) All the best.
Well I hope ocrevus works for you, I've used it for 2 years and it did nothing I just got worse plus make sure your insurance covers it, cause the infusions in USA cost 260,000 dollars and I'm in debt 8000 dollars for something that didn't work, hope it works for you
Hi Chris, I'm having Rituximab which is pretty much the same as Ocrevus. The theory is my immune system is causing all the inflammation and damage in my spinal cord, so by supressing it, will hopefully reduce the inflammation and allow my body to repair itself, and also stave off any further attacks and damage. Rituximab targets my immune system in a different way to my previous treatment so we shall have to see how it works.
I'm sorry to hear that Ocrevus hasn't worked for you, and yes it is terribly expensive isn't it. I really don't know how they can justify the cost. Fortunately here in the UK we have the National Health Service (NHS) so the cost is automatically covered.
Take care.
I'm so sorry you both are having a hard time. I have real bad hips so I need to use a cane.
Hey there, I'm really sorry to hear you have bad and painful hips. My wife suffers terribly also with Arthritis in her hips (and other joints) so we can really relate. I hope there is something that can be done to help you. Mind how you go.
Rituximab is "off label", meaning it is not tested vs MS... It was originally tested vs arthritis... It turned up to be a wonderfull treatment vs MS and was used for that for many years in some countries (UK/Sweden that I know of)... then at Rituximab's 25 birthday, the patent expired and anyone could make it and sell it for cheap.... So the medical company did a new test where it was tested against MS... After completing the "normal" 3 phase test, it was approved as medication vs MS and got a new name "Ocrelizumab/Ocrevus... It is now "on label" treatement for MS and very expensive.... Doctors can use it because it is tested vs MS.... Hovever, Rituximab is the same as ocrevus but a LOT cheaper....
Hey there, you've done your homework! I've also done the research and came up with pretty much the same conclusions as you. There is however some very 'subtle' differences in as much that Rituximab contains Human & Mouse parts (eww) and Ocrevus only Human parts. As you say though, they're pretty much exactly the same. I hope all is well with yourself.
@@NeilBradleyMS
I think the " very 'subtle' differences" are done to avoid being blamed for profiting on poor MS "winners" :-/
I think you could be right there.
Just wanted to say thanks again for this explanation about Rituximab and Ocrevus.. a lot of people don't understand the difference. I've copied and pasted your explanation to a recent comment on my channel. 👍
Please
Neil and Theresa , I missed you guys , every couple of weeks I will check to see if there were news from you guys .Praying for you often , I hope you find some relief with a new med, love you guys
Hi Jason, I'm guessing you didn't quite finish your message .. but thanks anyway. All the best.
Dear Carmen, that's so kind of you to keep checking on us and it touches our hearts so thank you. I'm sorry we don't produce video quite so often these days, but we will keep them coming as and when I feel up to it. Yes, I'm hoping the Rituximab has the desired effect because ultimately for me I don't think there is anything else they can offer me, so fingers crossed. Much love to you also - Neil & Teresa. 💕🙏
so they say you have NMO now? but you dont appear to have that. May i say your speech is slowling not found in NMO. Have you had opitcal neuritis then? my first symptom was ON, and have had it thoughout my journey. my lesions are on spine, i have been diagnosed with PPMS. I wonder sometimes if the doctors know what people have. Ocrevus does wipe the immunsystem and i refused it. Have had this disease since about 1999.
I am so sorry for Teresa. back ache is the pits. You are a star hun always happy. Neil get a shave it doesnt suit you lol. xx good luck with treatment. I have orthotics on tuesday for my foot its agony. but nothing like back ache. xxxxx GOOD LUCK WITH TREATMENT. but NMO i would query that lol.
Hey there, nice to hear from you.
Long story short (all documented on my channel) since 2013 I was diagnosed with MS. Only lesions on spinal cord, none in brain. Then in Feb 2019 I had a LP which still didn't show any sign of MS when clearly after this amount of time it should have done. So hospital sent me to a Professor of Neurology who seemed to think I fit the criteria for NMO especially since having a cold in March of 2019 which caused my right eye to start blurring. Turns out after lots of tests, my Optic nerve is now damaged. My first symptoms were not ON, they were always very spinal, numbness in my feet/legs. I've only just start suffering with my vision this last couple of years. To be honest, I've never felt I've fit the criteria of RRMS/SPMS (which I was diagnosed with) .. I've always felt I fit the PPMS criteria more so, but when I raised this with them they've always said not. But I'd never heard of NMO, and the more research I do on this the more I feel I fit the bill, even though all the NMO tests still come back negative.
Teresa back is feeling much better now thanks for asking, oh and I did get a shave lol. Hope your visit to Orthotics goes well, take care.
Covid vaccination should not be required for treatment. Any weakened virus in your body while having treatment is not something I would suggest.
Like 87👍👍👍
Hey there, and thank you so much for the 87'th like!! You're a star 🌟 I hope all is well with yourself. Take care now.
You've out on weight
Hi there, if only! I've not actually gained any weight (I need to though) .. my face is slightly swollen due to the steroids I'm having to take each and every day. Take care, and all the best.