FEELING DEFEATED: Relentless pain, Neuromyelitis Optica, NMO, MS, Chronic illness.
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- Опубліковано 16 тра 2021
- "When you are down to nothing, God is up to something".
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▶︎ Never thought I'd be WALKING like this again!! - • NEVER THOUGHT I’D BE W...
🤒 CURRENT SYMPTOMS 🤒
Numbness, Burning, Tingling, Humming, Buzzing, Squeezing, Skin Sensitivity, Altered Sensation, Balance problems, Chest Pain, Muscle Weakness, Stiff Lower Back, Stiff legs, Stiff knees, Blurred Vision, Anxiety, Depression
👣MOBILITY ISSUES👣
Muscle Weakness, Spasticity, Clonus, Abnormal Gait, Tremors, Walking difficulties, Falling.
😷DIAGNOSIS HISTORY😷
▶︎ Transverse Myelitis (2008)
▶︎ Multiple Sclerosis (2013)
▶︎ Optic Neuritis (2019)
▶︎ Neuromyelitis Optica (spectrum disorder) NMOSD (2019)
💊FREQUENT MEDICATION💊
▶︎ Methylprednisolone (IV)
▶︎ Prednisolone (oral)
▶︎ Azathioprine (oral)
💉PROCEDURES💉
▶︎ Multiple MRI Scans
▶︎ Evoked Potentials (2013)
▶︎ Lumbar Puncture - Spinal Tap (Feb 2019)
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Source: • ❰Chillout❱ Sappheiros ...
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![Neuromyelitis Optica (NMO) [Symptoms, Diagnosis, MRI Findings, Treatment, Clinical Trial Results]](http://i.ytimg.com/vi/xBCke5TsDGA/mqdefault.jpg)
It's terrible having pain and not being able to do anything. I understand. I am lucky I don't have to go grocery shopping. I order groceries online and have them delivered. And you're lucky to have such a loving and supportive wife. I'm glad to see Teresa walking about. She looks like she feels better from her back injury. Hugs, Patty
Thanks Patty, yes Teresa is feeling much better from her bad back now but it has taken several weeks to recover, and it still gives her the odd 'reminder' that it's not quite right yet. Yes, we could order online as well .. but I really didn't want to stop something I genuinely enjoyed doing, and we also enjoy seeing lots of friends around the store. Hugs to you also Patty. x
Oh jeez, plz somebody up there give this man a break!! Relatable, relatable relatable. Neil, I was at Tesco yesterday too and I had to stay in the car. Stacey did the shop and I watch her come back with the trolley and I just feel so guilty but I just can’t do it. I really truly hope the new treatment works for you or at bare minimum a relief of your struggles now. I’m so angry, not at you lol but at the bloody disease. It chops and changes when it wants, does what it wants and gives you a false sense of oh I feel ok today and then BANG it rears its ugly head. You said sometimes all we have is hope, very poignant, I felt that. As always I send my love and good will to you and Teresa
Hello :) I COMPLETELY understand every word you say .. and hey we have something in common then, having to stay in the car whilst our partner does the shopping!! And, I know what you mean about just not being able to do it. I wake up in the morning and think, hmm shopping today and I tell myself I'm going to try but if I do I just end up completely and utterly wiping myself out, usually for the rest of the day.. you know this feeling right? I too get so ANGRY and FRUSTRATED at this horrible condition, it leads you up the garden path doesn't it, gets you feeling ok one day and believing you can do things again, then boom back to struggling again. Yes indeed, HOPE I think is quite often all we've got isn't it.. but we must hang on to those thoughts dear friend. I do hope you're managing as well as can be, much love to you - Neil & Teresa. xxx
My heart goes out to you!! I appreciate your strength and allowing us to share in your journey. I have MS and can relate to not being able to participate in the simple things in life. God bless you both!!
Hi Gwendolyn, it's very difficult isn't it. As is no doubt the case with yourself, I've gone from being able to do everything and anything to literally having difficult walking from the kitchen to the front room. Everything just takes so much energy and effort now, it's soul destroying. Blessings to you.
Neil...just..yeah. We watched and understand. It’s hard to realise that...today I can’t. It’s hard to admit even to ourselves. Hugs to you both...💖💖💖
Thanks Susan .. I sincerely hope your recovery is continuing to go in the right direction. Hugs to you also. 🤗💕
💔 you’re a beautiful courageous man and my heart goes out to you bruv. Your hope and bravery really inspires me. Never give up!! 💪
Thanks Patrick, that's so kind of you to say.. I'm trying my best but I will admit it's difficult at times, especially at the moment. I hope things are as well as can be with yourself my friend. Take care.
Keep up the good fight my friend. I know all about the chronic pain got the pain management and MRI on Thursday so let's see. I think my wife is a rock also. Take care both.
Hi Adrian, good to hear from you. And yes about the pain .. as for MRI's I've also just had one, head and full spine. Neuro requested it out of the blue, that is the subject of my next video (currently in the editing phase). I was in the scanner for about 1hr 15mins!! I'm so pleased to hear that your wife is also a Rock, and that she's there for you. That is what it's all about isn't it, in sickness and in health. Take care friend.
God will sustain you and is there with you through it all. Dig out of the hole and join the rest of us. Neil, keep moving and don't stay in bed because you will lose strength and motivation. Praying for you brother always and let's run this race. Say hi to Theresa for me.
Hey Bodhi, always lovely to hear from you my friend .. and lets hope so. I have to say at times, I don't feel he's (God) being very fair to me though especially considering there is a lot of evil people out there with absolutely nothing wrong with them and in perfect health committing horrendous acts of violence. Where as for me, I've always tried to be a good person and help others where I can in life. I have to say, at times I have a hard time understanding.
Needless to say, you don't have to worry about me staying bed, I'm always up early and hate staying in bed un-necessarily. I have to say though, my motivation is taking a tumble just recently and it's becoming hard to stay focused.. I am trying though.
I hope all is well with you Bodhi, take care now. 🙏
I GOT DIAGNOSED with MS this past april. ive been suffering since then. trying to get over the optic neuromyelitis optica, ive suffered these last quarter of the year. Not certain what the future has in store. I hope these videos make you feel better. nobody really knows what its like to live with MS unless if you got it. prayers your way
Hello friends, We have missed seeing you and Teresa. My husband and I had COVID starting on March 18th. We were in the hospital and rehabilitation facility for a few weeks.We are much better now. We have physical therapy and nurse visits at home for two or three more weeks. We are so sorry to hear you are still in so much pain. We continue to pray for you and appreciate you keeping in touch. Bless you, Frank and Kerri
Hello you two! It's lovely to hear from you, Teresa and I are so sorry to hear that you contracted Covid!! Goodness!! Nevertheless, we are also VERY happy to hear that you have recovered and are much better now. Thank you for your kind message, look after yourselves - Much love Neil & Teresa xx
Oh, my dear Neil; such love in your heart and yet your body is wracked with pain. You said it right -
"when you are down to nothing, God is up to something." And He absolutely is!! Oh feel it, Neil and Teresa!!!
I won't get into preaching here, but I've come to a place of understanding that this life is merely a temporary place in which the LORD tests the hearts of man and looks deeply into souls to find those who recognize His Love and believe in the sufferings of His own Son.
So keep on with that good Hope. It is REAL!! And HE SEES YOUR PAIN.
Love you both!
Lovely to hear from your Elaine, I wasn't sure if anybody would spot that small quote in the description, but I see you have a keen eye. I agree with you, I too feel we are all in a temporary place of learning. I often say to people I hope there is something at the end of it all, because otherwise what is point? Much love to you 🙏
So good to see you guys. I was thinking about you just a few days ago. Hope for you Neil, that the new medicine works well and you can get about and not have pain. Again, it's wonderful to see you two and thank you for sharing this day and how you are doing. Despite the hardships you, Neil, and you, Teresa look rested and happy. Bless you.
Thank you so much for you lovely and kind message. Yes, I'm hoping the Rituximab give me some quality of life back, that would be just wonderful. So pleased you're enjoying our videos, take care now.
MY GOD I just though about you guys and here you are!
I wish you guys nothing but the best healing.
Big hugs, Lita.
Thank you so much Lita!
I hope the new medication will give you some pain relief Neil. You’re a great couple 😊
Thanks Ian, really appreciate it. 👍
I'm so sorry you're in so much pain Neil , I can imagine every day must just feel like a constant grind :(((.
Fingers crossed you get sorted with Rituximab soon and that it helps with normalizing / minimizing your pain along with your other symptoms. Try to keep your spirits up as much as you can, (I know its hard) , and keep that hope alive , like you say its the one thing we do have is hope !! Take care of each other , Grace
Hello Grace, lovely to hear from you .. you are sooo right, every day from the moment I get up in the morning IS a constant struggle and grind. Yes indeed, I am hoping Rituximab is the magic that will bring me back to life a little bit .. I'm not asking for miracles but even just 5 - 10% would be a nice improvement of quality of life. That is the hope! I also hope, you are keeping well yourself, or as well as can be Grace. Take care now - Neil & Teresa. xx
I'm so sorry to hear that you are still going through so much pain. I'm really hoping the new drug will bring you some peace. Despite everything it really show that you two are so happy together, and that surely must help you a lot. Big hug to both of you and keep us updated on your new treatment!
Thank you so much Kara .. and yes you're right, Teresa and I are so very happy. I was only just saying to a different subscriber that we hate being apart for even a few hours. Mushy as that sounds, it's true .. we do appreciate how lucky we are to have each other though. Sending some hugs right back there to you, and yes we'll keep you updated on the treatment as it progresses. x
Ahh Neil. Thanks for uploading an update. Sorry to hear about your pain. Living in hope that the new medication gives a better quality of life. Best wishes - love to Teresa 💐 what a diamond 💎 I miss Tesco ☹️
Thanks so much Nic, I really am hoping the new meds work as I feel it’s the last thing they can offer me. It basically Ocrevus. Yes, she sure is a diamond 💎. And yes, as for missing Tesco, I seems to recall you were originally from the UK. I hope you’re doing better Nic, I’ve been watching your weekly updates. Take care.
Neil I'm so sorry for what you are going through
Im really feel for both of you.. I'm lost at words I really wish I could just give you both a hug...
You have helped me by sharing and replying ...I wish I could do something for you..and yes after my relapse I was bed ridden for and had to learn to appreciate just to walk without thinking and without pain just for a day
I wish I had a magic wand to give you that☹️❤️
Thank you Gitte, for your lovely message. I'm sorry it's taken me a little while to get back to you. Both Teresa and I are so pleased that our videos are helping you in some way. I know what you mean about that magic wand, I wish I had one! I hope things are improving for yourself. Take care now. 💕🙏
Sorry you are in so much more pain Neil. keep that hope in your heart👍
I haven't been in a shop for over a year until yesterday,( shielding etc) birthday card for my daughters birthday , it's only a small shop and nobody else in there, was an odd experience, and off today for my second Pfizer jab. To be in constant pain must be & clearly is, so bad for you, mine comes & goes ,Although my mobility stiff, muscles giddy pressure in head vision problems and other things are unfortunately now permanent.
I miss seeing people & that social exchange which distracts from the monotony of illness, I understand you feeling low not being able to do your usual routine, even though that is very hard for you when you do go in the shop, hope this new treatment does the trick. And mate, you REALLY do have one wonderful soulmate , wishing you both all the very best xx
Hey there, always fantastic to hear from you .. and thank you for your lovely and kind message. You're absolutely right, Teresa and I are so happy to have found each other and we genuinely do believe we are soul mates. Without wanting to sound too mushy, we even dislike being apart for any length of time. We absolutely do appreciate how lucky we really are.
I have to say, a year is a very long time to have not been in a shop of any sorts .. but understandably during these troubling times. I hope your daughter had a fantastic birthday.
Hope the jab went well for you and you haven't felt poorly at all with it. My wife and I had the Astrazeneca which comes in two parts, we've had our done for a while now. But, we've heard from several people how it made them feel poorly with cold and shivers etc.
I too miss seeing people, as a result of not being able to go hardly anywhere now. It's not easy, so yes I'm hoping the new treatment does improve things for me if only 5 - 10%. I'm trying not to get my hopes up though if I'm honest, because too many times I've got better, only to be shattered a few months later.
I'm sorry to hear that you're not getting much better yourself by the sounds of things, and that your stiff muscles, head pressure and visual problems now appear to be permanent, so very sorry to hear this my friend. Know that you're not alone though.
It's Friday today, and slowly I've been answering a few comments each and every day this week. Great to hear from you, and I (we) hope you have a nice weekend. Here in the UK (not sure where you are) the weather is pretty POO to be honest. There is an old saying "Never cast a clout till may is out" and it's so true (you'll have to Google if not familiar).
Best to you - Neil & Teresa 💕🙏xx
In spite of the difficulties, you are both very precious. For a moment when Teresa, got back into the car after shopping, I braced myself for news that she had encountered the man from the hospital waiting area, inside Tescos and who proceeded to cough up a lung and several quarts of his own immune system, and so forth...
As I recall he didn't seem to have an issue with engaging in plesant small talk while Teresa had to live through a scene from The Exorsist.
I was relived to see that such was not the case.
However, one must be prudent and expect the expectorant, as it were.
Hi John, nice to hear from you. Teresa and I had a really good laugh when reading your message 😂. Fortunately, we’ve not (as yet) bumped into that same fine gentleman again, but there’s time yet. We are in fact at the hospital again tomorrow, it’s my second home at the moment. I hope you’re well.
I love you guys... always puts a smile on my face, even when the news is not great because there is so much love in your relationship.
Thank you Cynthia, and yes indeed! Not sure what we'd do if Teresa and I didn't have each other, we rely on one another so much in different way. We hate being apart, even for a few hours. We do feel very lucky and very blessed. I hope all is as well as can be with yourself Cynthia. Take care now.
Neil,I am so sorry that you are in such wrenching pain. We understand and send prayers. Hoping you will get some relief!!
Thanks Avril, appreciate your thoughts as always.
So sorry for your pain. So good to see your lovely faces. Big virtual hugs to you both ❤
Hey there, nice to hear from you once again.. I hope you're keeping well. Hugs to you also. 🙏
I understand how that feeling can come over you. I am an extremely positive person and like everyone I too have times where I feel defeated. You both are in my thoughts. The first think I check for is updates from you.
Ahh thank you so much 💕
Hi Neil, I've been following you for a while now and I must say I really enjoy your videos. They are full of life and hope. Your wife, Theresa, is a hidden gem. You are so lucky to have someone like her by your side. Please post more videos and meanwhile I'll catch up with what I've got left to watch. You have a fantastic day ahead and thanks again for the wealth of content you always provide. I can tell that you're able to lead an eventful life despite all the hurdles. I'm sending hugs to both of you across the miles. Stay blessed. Antonio
Hey Antonio, and thank you so much for you lovely message. Teresa and I are so thrilled that your enjoying our videos, and that you're catching up with them. Yes, you're absolutely right about Teresa, she truly is a gem .. I really don't know what I'd do without her (I truly am very lucky). I always say we were destined to be together. Yes indeed, I will keep the content coming, in fact I'm working on the next video now but it might be a few days just yet. I hope that all is well with yourself Antonio. Hugs right back there to you also. Take care now. 🤗🙏
@@NeilBradleyMS Hi Neil, thanks for your reply. You are amazing for facing this with so much courage and hope. Stay strong and remember how many people care about you. I am one of them and will keep rooting for you. 💪🍀🤗🙏
Thank you Antonio, appreciate it. I hope you are having a lovely weekend. All the best.
@@NeilBradleyMS Thanks, same to you!
Just discovered your Chanel a few days ago and I’m finding it really helpful. I’m on the waiting list to see the neurologist but they’re so far behind because of COVID I think it’ll be a while yet. What a lovely couple you are and I’m so sorry you’re feeling so down, but totally understandable. Sending healing and positive energy for both of you…. Take care Stu 💙🙏🏻✨
Hey Stu, thanks so much for your kind message.. very much appreciated. Yes, unfortunately Covid has slowed everything down hasn’t it. I hope you’re symptoms aren’t too bad and you’re managing ok. Thanks for those healing thoughts, sending some right back there to you. All the best. 🙏💙
The pain is absolutely insane!!
Hey there, yes indeed. I sincerely hope you are not suffering too bad from the pain. Sometimes I don’t get a break, it’s just terrible. 🙏
This is such a beautiful video, I know your not in the greatest of spirits but this really pulled at the heart strings you have a calmness about you that makes this so easy to watch. I hope you manage thw next part of this journey and things get brighter soon
Hi there, and THANK YOU for your lovely and kind message. Messages such as yours really inspire me to continue producing content. Yes, I'm hoping the treatment works it's magic .. I'm not really looking forward to it but I'm trying to be the best version of myself that I can. Take care. x
Arr she loves you soo much 💗. I had to collect some shopping from tesco my partner made me go, and I had a fall in the carpark, lucky 2 kind people picked me up, just my pride hurt nothing broken but it really got me down.
Thank God you’re okay...phew 😅
Hi Indie, yes indeed she does and I can guarantee the feeling is mutual. I'm terribly sorry to hear you had a fall, but at least nothing hurt or broken (apart from your pride of course). Fortunately this has never happened to me yet out in public, but it's one of my biggest fears so I can completely understand how this got you down. Take care, and mind how you go.
HUGS and HUGS and HUGS! I am so glad you have each other! The love you share just mushes out of my screen and all over in a big sloppy mess! It's wonderful! Neil can you get a scooter? One of those little motorized chairs (not a wheelchair)? It would save you energy and perhaps ease a little of the pain and let you go with for shopping. I'm starting to beat on my doctor for one. I cannot go shopping for long. My son wants to go snoop through toys and electronics and my energy just saps out, my back starts to sing the song of it's people and I wind up in bed for hours afterwards. A scooter would help so much. Maybe you can get one? I like the term "hissing"... it is a very good description. Most of the time my back is stiff like yours. Like hardened rawhide. I fall a lot. I had a fall in Nov that nearly broke my jaw (I lead with it you know lol). I hope your new medicine help. I think of you two so often! Hugs and Hugs.
Hi "J" .. thanks for your lovely message .. Teresa and I had a bit of a laugh when we read your message regarding the love mushing out of your screen ha ha. As for the scooter, I do actually have one but it's too big and heavy to get into the car. I while back I did consider getting a bigger vehicle with a winch, but then I got better and now, well .. I just don't know at the moment, lots of if ands and buts.
If you're having falls and almost breaking your jaw, you seriously need to be more careful!! And yes, the "hissing" legs is quite a good description isn't it, I also sometimes use "screaming" legs. Both describe the incessant pain quite well I think.
Hug to you too, from the both of us 💕🙏
@@NeilBradleyMS I was considering nagging my doctor for a scooter (she's not a fan) but wondered if my tiny lil Fiat could handle it. A few days later saw the same sort of Fiat I drive (500 sport) with a scooter packed on the back! I'm for it if my silly doctor will allow. I run out of energy SO FAST a scooter would be a godsend.
I say go for it if possible!!
@@NeilBradleyMS talked to my medicaid case manager and we figure I'll get my new neuro to request it. I am not sure my doctor would be effective. She is SURE it would prevent me from walking. Silly woman!
Neil, I have enjoyed your sharing, thank you.
I was diagnosed with MS in January 2021. I have been struggling with my mobility and balance issues. Working on my new stretching exercises helps. Learning to pace myself, fatigue is a big problem. I'm finding yard work challenging now. Heat wipes me out.
Keep up the Good Fight. God bless, take care :)
Your Canadian friend!
Hey Dustin, and thanks for your message. So sorry to hear you’re suffering all of these horrible symptoms having had an MS diagnosis. It’s not easy is it. You’re doing good though, stretching and exercise will keep the muscles as efficient as possible. Important to remember though, it’s not the muscles at fault, more the wiring (your nerves) which deliver the signals to the muscles. Definitely pace yourself, it will help .. if I’m in the garden I tend to do ten to fifteen mins and force myself the have a fifteen min break whether I feel like it or not, I usually need to though. Good to hear from you, look after yourself.
Neil, so many of the drugs you are on are given for vasculitis patients. There is a vasculitis uk Facebook group which may help you with rituximab, etc.
Thank you Nancy for this information, the Facebook groups are very helpful aren't they with lots of 'real life' people living with conditions and taking these medications. I hope you are well, take care.
It was lovely to see you both 💚🧡🧡
Thank you so much Anna. 💕🙏
Don't give up Neil😘
Hi Michelle, I'm trying not too but some days are so incredibly difficult I do actually feel like giving up! At the moment, I rarely get a good day .. but I have to say, so far, that today isn't too bad. I hope you're doing ok too, take care now. 🥰
Take care Neil. I had to stop doing things I once enjoyed . I feel like a elderly man at 50 am so slow most things are like a project. I hope you can get the results from your new medications. God bless you and your wife.
Hi Duane, good to hear from you .. I'm 50 next year, and like you say everything is like a mini project. I have to set myself the project and break it up into smaller parts in order to complete it and then I find it soooo difficult. I'm know, that you know where I'm coming from. And thanks, yes I suppose I'm pinning a lot of hope on this new treatment. Haven't seen a video from yourself in a while Duane, I always find it interesting to see how you're getting on. Take care.
Sending you both love and huge hugs .. Thinking of you truly ..be careful on those stairs...I'm still suffering from my two falls..on my rear...hope you find some peace from the pain.Thinking of you both❤️🌹
Thank you for this, I will indeed be careful on the stairs. I'm sorry to hear you're still suffering from those falls, hopefully you're on the mend and it won't be too long until you've recovered completely. Take care now. 💕🙏
@@NeilBradleyMS hope you find some peace too my friend..love to you both 💞💕
Oh Neil I know know what Chronic Pain is all over my body too from being hit by an SUV that happened in 2003. From being on from Chemotherapy(2014 - 2018) and all the other Not so Fun things I had to Go though it was tough I have Issues to this day from the Chronic Pain from the SUV Accident and then being in Chemotherapy brought more pain Issues to my self I have been in pain Since I have been 21 years old that is when the accept was them 2014 Start of chemotherapy for the past leukemia that I had. I know what you mean the Word PAIN I know we are in different pain Issues but I feel that I can relate to your issues. After watching this Video that you and Teresa posted you made me start thinking as to when I started watching your Channel on You Tube of how you first started out and what and where you are today I just want you to know I AM REALLY PULLING FOR YOU
I have been praying every day for you and Theresa I looked up the medication Rituximab.(think that's how spelled) but anyway I looked it up to see what it is used for and from what I Seen I think it is used from Cancer Patents and other Medical Issues for different People that have Medical Issues I know this treatment will work it will I keep thinking Positive for you it works I kept thinking a positive outcome when I was diagnosed with Acute Lymphoblastic Leukemia in 2014 (It is the worse Form of the Leukemia Group it can attack your Organs and progress more quickly) But I was determined to Beat it yes I hat a Lot of tough moments but I kept my head up and never looked back and as you know I am Cancer free 6 years and one week later but what I am saying DON'T GIVE UP!!! I know in a sense of what you have to Go though just in a different Form I wish you the best I am thinking Positive for you and you and Teresa so the same THINK POSITIVE This treatment will turn you around it might take a little Time to a just for your body but the results will show in time just hang in there for me I will contacted you on This Video ( or if you Post a new Video before your treatment day) I will Message you a couple days before for your treatment.
But till them please you both take care
I keep praying for you that you feel better The both of you take care and yes coffee Sounds good Take Care - Amanda
Thank Amanda for this message, wow! You really have been through it haven't you, what with your car accidents and then having to go through Chemo years later also. I'm sorry these things have happened in your life, and as a result you have to deal with Chronic pain daily. And BTW, excellent being Cancer free for six years .. long may this continue.
As for my channel, I put out my very first video about MS in March 2016 if I recall correctly. You definitely are one of my long term subscribers.
You are correct, Rituximab IS a Cancer treatment but I'm not sure how it works in treating Cancer. For my condition, it kills off the B-cells in the immune system which are thought to be responsible for inflammation. I have inflammation in my spinal cord, hence all of my disability so if I can get it reduced the hope is my mobility will improve, and also my quality of life. Only time will tell I suppose.
Thank you again for your lovely message, and take care - Neil & Teresa.
@@NeilBradleyMS Thanks Neil I got the Message you and Teresa take care.
i'm so sorry you have to go through this. x
Ahh thank you so much for your kind thoughts, I really appreciate them. I hope that, all is well with yourself. Take care. x
God bless you both ✝️✝️🙌🙌🌹
Thanks Carlie, blessing to you.. nice to hear from you. Hope you're keeping well. 🙏
You two are a beautiful couple. I wish you well I pray for you today I feel your pain. I remember times in the grocery store where I would get slower and slower in pain and eventually I'd be staring at a full cart in the middle of the aisle with tears coming down my face because I couldn't push to the checkout. I know in the US they have a motorized cart that you can sit on to do your shopping do they have that in it the stores where you are at? I do hope the new medicine will begin to start reducing your pain. Remember never lose hope our bodies are fragile but our hope and our spirit remains forever peace and hugs and love.
Thank you Michelle, for your lovely message. I can relate very much to not being able to push the cart in the store, in fact I don't do it at all now (when I am able to go in) but I hold on to it instead while Teresa pushes it. We do have mortised shopping carts, but unfortunately the seats are so hard and uncomfortable I'm not able to use them. Most of my pain is in my back, and the seats on these things don't have proper support for me. But it's not just that, and I'm sure you'll understand where I'm coming from when I say, I want to walk and use my own legs! Especially after doing so for almost 50 years. It's a me thing, I'm not sure I'll ever come to terms with my mobility problems. You take care.
Arrrh Neil, I feel so sad seeing you suffer, I so get your hissing legs and concrete back....yes, Rituximab will give you a lift, it has good reviews, I'm hoping for you to get relief ASAP. .. chin up dear, you will get there. Xxx
I really do hope so, I've also read a lot of good things about Rituxmab so I'm keeping my fingers crossed. Yes, the "hissing" legs and "concrete" in the back was very descriptive and a good analogy I thought. I think just saying things 'hurt' just isn't enough for people to understand sometimes. Take care. xx
Awwwwwww bless ya. Why don't you get a fold up leccy wheelchair? Teresa is so lovely,you both are. Love watching your videos. God bless xxx
yes i said the same it is how i go out with PPMS. you can also get assessed by OT for one. free on NHS.
Hi Dawn, I realise there is that option .. and in the past Teresa has had to push me in the chair to Hospital appointments (not that long ago), but at the moment a hospital is the only place I've used a wheel chair. I have in fact got a scooter in the garage, but unfortunately it's too big and heavy to get in the car otherwise I might use that. The scooters provided at the store are simply too uncomfortable for my terribly painful back. Super pleased you love watching our videos, blessing to you also. xxxx
@@NeilBradleyMS Electric wheelchair should fit in your boot,and they are so comfy. My biggest problem is getting in and out of our car,I have to use transfer board but am finding it more and more difficult so will probably have to get a wav, depressing but will be easier xxx
Hi Neil,
Just wanted to wish you good luck for your new treatment tomorrow, I've been following you for months now,I have multiple sclerosis, I'm also being investigated for other neurological conditions , your situation and symptoms are almost the same as mine,I thought I was going crazy as dealing with all these odd symptoms and chronic pain and chronic fatigue, I'm also on azathioprine, and steroids for the last three years but like you I'm not seeing any benefit ,so I will be watching with interest on how the new medication will help?.
I just want to say how brave you are in explaining your journey on UA-cam as it can't be just me you are helping, and I can see like me you have a fantastic wife and you seem to be a great team looking out for eachother.
Take care mate,from one Ms warrior to another and good luck with it all.
Mark.
Hi Mark, and thanks so much lovely message. I find it very interesting you’ve been on the same medication as myself. It’s a lot of work for me, but I intend on recording a weekly video with progress reports so hopefully you’ll find this very useful. I’m a bit worried how the treatment is going to make me feel. I’m also quite anxious as my wife isn’t allowed to be with me because of Covid etc. I may even post a video tomorrow whilst I’m actually at the hospital, just not sure yet so watch this space. Thanks so much for the check in 👍
@@NeilBradleyMS
Like I said good luck Neil, I'm sure the day will be over as quickly as possible ,I look forward to seeing this treatment work wonders for you , take care of yourself,and I hope your wife's back is feeling better, and you get home and comfortable ASAP.
So sorry you are going through this Neil X
Thank you Jayne, I really appreciate your kind thoughts. xx
@@NeilBradleyMS - your welcome Neil, Im still twitching 24/7 , still no idea why as the calcium supplements have made no difference. Its just so exhausting :-(
Hi Jayne, I’m so sorry and can really appreciate how EXHAUSTING this is for you. I’m no Dr, and clearly can’t give you advice. However, the drug which has helped me with the incessant twitching is Clonazepam or Diazepam. Perhaps you can talk this over with your Dr and maybe try it. 🙏
@@NeilBradleyMS - thanks for that Neil, i will have a word with the doctor. She put me on Mertazapine which was horrific, i took it for like 4 days and stopped it. She did mention it could be RLS but i dont think it is. I just googled both those, and think i will ask about Clonazepam. I dont do too well with medications as a rule. But have to try something. How are you doing now ?
All I take is one 500 micro gram (low dose) Clonazepam at night. It doesn’t stop the twitching completely but I find I will go several days without even noticing UNTIL it does show itself again. Clonazepam is a muscle relaxant but it works differently to those such as Baclofen. I can’t take the latter as it makes me far too wobbly, my weak muscles become even weaker which is not a good thing for me. I just turn to jelly!! I never go straight into a high dose, always start small and try and achieve that balance between the the drugs help, and it’s side effects, but maintaining that guidance with your Dr’s suggestions and approvals etc.
Unfortunately I’m not doing very well at all, mobility tumbling big time and pain increasing. I’m trying not to turn to the pain killers (opioids) too much, but honestly it’s difficult. As you may well know, when you’re in SO MUCH pain 24/7 you just want it to stop!
Hoping you feel better soon! I have chronic illness as well. Thanks so much for sharing and inspiring others!
For MS issues, I assume they've already tried nightly Tizanidine for pain and morning Amantadine for fatigue already.
Hello there, and thank you for your message. I'm sorry to hear you have a Chronic illness also. For me, the problem with a lot of these drugs such as the one's you mentioned is they are CNS suppressants, which slow down the signals to my muscles even further. The end results being I'm even wobblier, so I have to be careful what I take. I've found Clonazepam to be quite effective, but this still makes me wobblier. Ho hum, such is life. I hope all is well with yourself.
@@NeilBradleyMS Clonazepam is a central nervous system depressant. The medications I mentioned are not. Tizanidine signals the body to not release so much norepinephrine into circulation, so it specifically targets only the sympathetic nervous system (fight or flight response) and is a popular treatment for MS. Amantadine has stimulant properties and improves muscle activity and reduces wobbliness, which makes it very popular to treat both MS and Parkinson's - this one is the exact opposite as a central nervous system depressant, and works wonders at treating fatigue.
Ahh I see, thank you for this. I will research them and maybe bring them up with my Neuro. I know she mentioned Tizanidine before, a while back. Thanks.
@@NeilBradleyMS If you try Tizanidine for your MS symptoms, studies have indicated that nightly dosing works quite well, with the least chance of causing drowsiness or fatigue during the day:
pubmed.ncbi.nlm.nih.gov/20502134/
same freakin boat here. although erector spine of mine may be rubbery. darn cervical lesions.... U ain't alone.
Hey Tom, it’s not easy, I hate it and I’m so tired of it!. I am in fact, sat writing this message to you sitting in my car, in pretty much the exact place I shot this video. I don’t even bother trying to do walk and do the shop now, just no point. May as well conserve my energy.
Lord Jesus have mercy upon Neil. I pray for blessings and peace and health. In Jesus holy name. Amen.
Ahh bless you, you’re so kind. 🙏
God bless you both, I hope the rituximab medication helps you.
Hey there, good to hear from you again .. and thank you. I hope so too, only time will tell I suppose but I will keep you and everybody up-to-date with progress. I hope all is well with yourself.
@@NeilBradleyMS Everything is thankfully going well with my Ocrevus medication and hopefully it stays that way.
I hear you Neal , with me I feel guilt, frustration, sadness, anger, that my husband and family have to attend many functions without me. Or we go and I have to leave early. I try but I just can’t at times. They say they understand but I know they really do not. To say MS has disrupted our lives is an understatement. But I am soo thankful for my loving hubby and children. Hugs to your beautiful wife 💕
Dear Jayne, I sooooo know where you're coming from with regard to finding it difficult to attend functions and social events etc. It's taken several years of slowly educating people, and yes sadly, letting them down as well but I'm now at a point whereby they really do understand. I get the anger and frustration, I really do .. there's nothing more upsetting than being invited somewhere, and you would love to go only you know in the back of your mind you simply can't do it, however much you tell yourself you can. So, often we try anyway don't we .. only to arrive and within minutes (sometimes) the body is saying you should have stayed at home!! I've lost count the number of times I've done this. I'm never placed under any pressure, but I put the pressure on myself .. I'm guessing you know where I'm coming from right!
My wife is going into Nottingham city centre on Saturday to make an important purchase, something we used to do on a regular basis together. Teresa never puts any pressure on me, but for the last three years I've simply not been able to do it, and it breaks my heart. I really do wonder how much more is going to be taken away.
It's lovely to hear from you Jayne, you take care now. 🙏
Hugs x
Same to you Michelle. 🤗
Hi Neil, I know this is an old video, but I was just browsing your videos and I happen to feel absolutely defeated at the moment. I am getting worse and it turns out I am having some sort of peripheral neuropathy, Both of my hands and feet are tingling/burning and it's radiating upwards. I now know what you mean by "being plugged into the electricity". I am sitting here in misery waiting for my neurologist and sadly going to the emergency room is worthless because they don't do anything besides check my blood and hand me a tylenol for pain. I have noticed it is always worse at night, which I think might have to do with our body's natural anti-inflammatories being depleted and the simple fact that you are just laying down not moving and completely focused on your nerves. Anyways, take care, your videos really do help me in this difficult time.
Hey there, good to hear from you. But I’m sorry it’s under these circumstances. It sounds like you’re going through it at the moment. Peripheral neuropathy is a fancy word for nerve pain and possible numbness, as you probably know. Oh yes plugged into the electric, for sure. I still use that expression now sometimes. How are you feeling now, did their investigation discover anything that could be causing all your pain.?
Right now the cause of my peripheral neuropathy is unknown, I am not diabetic which is usually the case for most people. I am feeling a range of symptoms from tingling/burning/stabbing, and ice cold sensations as if I am standing on a brick of ice even with warm socks and normal temperatures. 15 more days until I see my neurologist, this really sucks. @@NeilBradleyMS
Neil, hope you are better! Why are removing medication?
Hi Bonnie, no better I’m afraid.. if anything I’m worse which is just down to steady progression of my illness, despite trying to stay strong with my own Physical Therapy exercise routine which I do twice a day.
As this video is about a year old or just over, I’m not quite sure which medication I was referring to in the video?
Every day since last 2 years i am dying of this pain , all my orthopaedic do is give me muscle relaxant . I am worried i might be having ms but i just hope i get fine 😢 cause the pain is killing me
Ahh bless you, I’m so sorry to hear you are in so much pain. It very debilitating isn’t it, being in pain 24/7. I also find it’s hard for others to comprehend and understand when they are not suffering themselves. Obviously I’m not qualified to diagnose you, but I’d be interested to know what sort of pain you are in. There are lots of conditions that can mimic the pain of MS, such as a disc bulge in the back for example. You may need to seek out a second opinion if you feel you’re getting nowhere with your current Dr. Take care.
I was going to doctors for years for my neurological problems (MS possible) but they only have a favorite thing to say "There is nothing wrong" even when it is very evident, then I get the bill in the mail. Doctors do not help with my failed back surgery pain and adamantly say not to take OTC but I put two 650mg pain pills in my oat drink along with vitamins each morning which helps with but does not stop back pain and neurological pain.
I'm sorry buddy ,I know exactly what your talking about, wish there was something to help
Thanks Chris, appreciate your thoughts 🙏
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Sadly welcome to my world PPMS. Hizzing is right, tingling fizzing, and nerve pain in my ankles and feet. I went to orthotics last week as my left foot isnt lifting and i cant feel it or understand where it is. they were talking about a brace, but when they met me and saw me trying to walk. they just said, sorry Mrs there is nothing we can do anymore. Your nervous system is not telling your foot what to do. so nothing left for me. the concrete in the back is call SPASMS. Baclofen helps that i am told i use a heat pad.
I havent driven for years cant. OK scolding. why cant you go out with your wife get an electric wheelchair, you can have one from OT. you can ask OT to get you a rising bed so you dont have to worry about getting out of bed. Your letting all this get to you. PAIN, hun i have it everyday nothing for me. just pysch drugs which make me feel worse. also diazepam helps the back spasms. DONT STOP DOING THE SHOPPING. GET A SCOOTER OR WHEELCHAIR. ok......i have one and it gives me freedom when my care worker takes me out.
dont rely too much on meds. rely on your own inner strength hun. and that of your lovely wife. I follow this guy he knows miore about MS then anyone i know.
Aaron Boster MD. he is an expert on MS and runs his own centre in USA.
I havent been able to walk around a supermarket for about 16 years lol. xxxx come on mate you can do this.
Hey there .. unfortunately I'm all too aware of the PPMS world. Sorry to hear Orthotics can't help you anymore. In a similar way your nervous system isn't telling your foot what to do, when I shut my eyes I (sometimes) loose all sense of where I am in space and time. The end result is if there's nothing to hold on to nearby, I fall!
I've tried Baclofen years ago, unfortunately it just turns what little bit of strength I have left into jelly, so I don't take it. I find Clonazepam (same class of drug as your Diazepam which, I have some of as well) works better for me, but still has a similar effect.
Thank for the scolding lol .. I know where your coming from with regard to the scooter/wheelchair etc. I've got a scooter, but unfortunately it's too heavy to get in the car. The original plan a couple of years ago was to get a Mini SUV and have a winch installed, but then I got a bit better and stopped using it. I never really wanted to part with my old faithful Honda (car) anyway, also I'm never sure how much longer I'm going to be driving. So lots of if ands and buts .. hopefully I'll figure it all at some point. I want to be able to walk for as long as possible, so transitioning from legs to scooter is a big deal for me, as I'm sure it is for anybody. Haven't quite got my head around it yet.
Yes, I know about Aaron Boster .. been subbed to him for quite some time now, his channel has become very popular hasn't it.
All the best - Neil.
Neil, what ever happened to your scooter?
Hi Karen, well I've still got the scooter but unfortunately it's too big and heavy to get into the boot of the car. When I purchased it almost two years ago now my intention was to get another vehicle (mini suv) and have a winch installed, but then I got a bit better and I stopped using it. I never really wanted to part with my old Honda anyway as it's always been so reliable, still is. I also once purchase a 'boot scooter' one those that come to pieces, but what they don't tell you is you've still got to be pretty strong to lift it all out and fix it together. It was just so difficult to do for both Teresa and I so we let it go. Take care.
@@NeilBradleyMS I thought of that after I commented. I hope the new treatment helps. Have a nice weekend you guys.
Hi Neil and Teresa this is me it is getting progressively worse x
Hey Julie, how lovely to hear from you again.. and thank you for your message. I'm terribly sorry to hear that this is you also, we're both on the same page then! It's not easy is it. You look after yourself, and mind how you go. Hope to hear from you again very soon. Take care now. xx
I am waiting for mobility scooter. I hardly get any sleep I get a lot of jerking. I am struggling to walk around the house. I am putting weight on because of baclofen & pregablin. I am stuck indoors 24/7 I am struggling to use my rollator. I love my life (not) x
@@juliecasey3815 When you said “you love your life (not)” boy I can relate!! I too am stuck in the house, I can drive still though but then I’m stuck in the car 🤦 I get the jerking as well, every time I’m lethargic and tired it’s starts, keeping me awake. It’s like slow torture, I’m sorry you too are suffering with this. I find a drug called Clonazepam helps me with this. As for walking around the house, I’m with you there also. Struggle moving from the front room to the kitchen. So sick and tired of it. Hang in there 💕xx
@@NeilBradleyMS I have just been doing ms exercises on UA-cam Dom Thorpe he is really good you should try it. I need to try lose weight x
How are you Julie?
I'm in the same boat right now, except my optic nerves are so shot that even the best and highest doses of steroids won't help😭😭😭
Hello Jamie, I’m so terribly sorry to hear this. I’m guessing as a result your vision isn’t so great. This must be so difficult for you. I’ve now stopped having the high dose steroids, because for the last few times I don’t feel I’m getting any benefit. The last and final time I had them was August 2022. I’m just slowly deteriorating, no matter how hard I try to keep strong and keep going, it’s hard. Know that you’re not alone Jamie, and by talking to other people going through similar things it will help you too. Always here. Take care. 🙏
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I wish they had scooters or electric chairs for you at Tesco’s
Hey there, they do have them but they are so incredibly uncomfortable for me. My poor old back would never be able to handle them, the seats are very hard and small. Not good for a tall person. But also, I’m finding it difficult to make the transition in my mind from using legs to scooter. It’s difficult for me. I hope all is well with yourself.
Hello Neil. 'The goal of modern medicine is not the integration and healing of a person as a whole, but the chemical treatment of the effects of the problem'. Please consider going outside of the box on this one since your choices are so reduced. At least research Low Dose Naltrexone and Hyperbaric Oxygen Therapy for the possible cessation of your disease. You were a keen gardener - did you use Roundup or other toxic pesticide/herbicide chemicals that might have brought on your systemic disease? The NHS obvioulsy can't help because they are not looking for the source of your problem so you have go see a functional or integrative medicine doctor for comprehensive testing. This is not your last chance so please don't add to your psychological stress by thinking that because the mainstream can't help, there are not alternatives.
Hey there, yes I was a keen gardener .. still am to be honest but just find it so difficult at the moment. No, never used any toxic chemicals ever .. I like to just tend the garden, weed it and let it just do it's own thing really.
I do feel the NHS are a tremendous help, and are in fact looking for the source of the problem very diligently, only the other day they had me in for full head and spinal cord MRI. Clearly I am getting inflammation in the spinal cord (caused by my immune system), this has been proved because when I have the anti-inflammatory steroids for three consecutive days, as a rule my mobility improves significantly (inflammation reduced). I'm soon to have Rituximab treatment which will suppress my immune system targeting B-Cells, and the hope is this will reduce inflammation in my spinal cord. They don't know why the immune system (in Auto-Immune conditions) turn inwards and attack the body, it's a medical mystery at the moment.. hopefully science will come up with an answer to this one soon.
I will indeed do some research on LDN, however from the brief bit of research I've just done, Dr's in the UK don't like to prescribe it.
Regards - Neil.
@@NeilBradleyMS Thanks for the reply. Yes, the NHS appear to be helping but it's the end product which is important so the fact that you are being allowed scans means little when you are going to end on a drug which will suppress your body's ability to fight off disease and which will make big pharma profit. Low Dose Naltrexone is an off-label drug for auto-immune conditions and is advised against because it's cheap and makes pharma no profit. I know you will try the Rituximab but if it doesn't work, please fight for LDN even if the doctors are reluctant. There are practically no side effects to it and it has worked wonders for people for with auto-immune conditions. Do an extensive search on the internet because big pharma and big tech work hand in hand to suppress what is actually effective and only promote the big money making treatments. This whole Covid scamdemic and ensuing lockdowns etc has only been able to work because they suppressed and defamed working treatments like Ivermectin, Hydroxychloroquine and inhaled Budesonide. Again, they are cheap as opposed to the billion dollar gene thrapy injections that they have used fear based propaganda to push on the public. There is a dark underbelly to the allopathic Rockefeller medical establishment that has caused so much pain and anguish in this world due to the greed and power mongering of psychopaths. A lot ot take in and consider, I know! Well good luck whatever you choose.