@@kathycollett4942 Hi Kathy, that is a very brave step forwards, well done you. The Ocrevus will keep suppressed the part of your immune system believed to be responsible for MS attackes. It works really well and should slow down any further attacks. Proud of you 👍 💛🙏
Sadly, as we age with this condition, everything kind of gets to this level of intolerable. I just sit and cry in my chair. Someone gave me the advice to take a long walk so i'd sleep better, and i literally laughed out loud. Sorry also to hear about Teresa's pain. Hour by hour we take it, sometimes, minute by minute, but we DO hold on, yes? We just do.
Hi Elaine, yes indeed we do.. often it is hour by hour and sometimes we don't know how we're going to get through the day. Alas, each morning we wake up to face yet another one. Take care.
I am sending my thoughts and prayers to you, stay positive and strong. If it makes you feel any better, my life is a nightmare. I spend everyday with the most intense dull aching pressure that sometimes can feel tingling/tickling or having 40lbs of crushing weight sitting on my left side. This pain is there whether I exercise or not, it's just permanently attached to me. I just did 3 MRI's a couple days ago, and now I am awaiting my test results. Everyday I have to calm myself down and say "you went to two cardiologists and did every heart test possible". I will give you an update when I get my results.
I'm so sorry this keeps happening to you Neil. I wish I could do something for you. All I can do is pray that it eases for you so you can sleep. I have insomnia. Have since my 20s and i still do. I get 6 hours on a good day and even less most of the time not from my MS just because... I understand somewhat. Oh and now I'm in my 50s so it's been a struggle for years. Suggestions sleep when you can even if it's a power nap in the day time. I find for myself my body will doze off for 15 minutes out of nowhere just shuts me down no choice. I think it's out of nessity. Just be open to take a nap in the day if you feel it. I'm not saying this is forever just for now until it calms down for you. I hope this will help you. Take care of yourself. God bless you and Teresa. Peace. 😇😊🤗😔😟
Neil my thoughts go out to you. It's madness not being able to sleep through spasms I used to get them in my right leg the way you explain yours. I'm so lucky that the baclofen worked for me and so sorry it doesn't for you. Sending positive thoughts to you and Theresa.
Oh Neil!! Bloody RUclips didn’t send me an alarm for this or your last video! I just fell over this one … by being up, unable to sleep…and with similar problems, but for me it’s mainly in my right leg. I’m so sorry I’ve been AWOL lately. Life…just gets in the way sometimes. I’m so sorry to hear your legs are weakening and the spasms and pains are so much worse. It’s tough being in pain and being sick - and not being able to sleep..makes everything worse. As I’m typing this I m wondering if you are up again, in pain and exhausted. Much love to Teresa 🎄 too… Have the best Christmas Day possible. ❤️❤️🎄❤️❤️
Intrathecal Baclofen pump that delivers micro dose of the medication directly into the spinal cord, retaining leg strength, but massive reduction of spasms...
Hello Neil. So sorry for the two of you. I have limb disorder movement. For me, an ice pack on lower spine helps me some. I had a seizure due to lack of sleep. Again, I am so sorry. M..H.
Hello Melinda, this sounds just horrible.. and I can well imagine how the body would react with a seizure due to lack of sleep. I do hope you're managing to sleep somewhat better now.
Sorry to see you’re sitting in your living room at 4.30 😞and poor Theresa too.. I’m not sure I’m going to make it to the loo when I wake in the night as the numbness which started in one foot has spread to both legs now, I hope you managed to enjoy some RuneScape and you were able to get more sleep, we have to take the rest when we can get it 😞🙏🏻xx
Thank you Kathy, things have calmed down somewhat but I never know when it’s going to get bad again. I think that is probably a boat we have all been in.
Hey Neil, K.P here again, the MS gods must be out and about again. Last night I was spasming badly as well. Mine start in my toes and then shoot up to my thighs. I had nightmares when I did fall asleep with the help of some antitime's, but the temperature here in Australia has been hot and it makes it hard to stay comfortable. So with little sleep I was a mess today (I am writing this 1 hour after the video went live and it is 5.30pm) Spasms from my neck down to my fingers. Don't do Baclofen! It was designed to help people stop drinking alcohol and can also give you nightmares and even suicide. I tried it and it made me worse, gave up after 4 days. I use the following to help me sleep, Melatonin 2mg, Magnesium 400mg 5 a day for spasms (spread out). Lipoic Acid 300mg twice a week ( helps reduce brain swelling and it also is a very powerful anti oxidant) I also use celery seed for inflammation and cranberry to help with possible UTI's, That is just the start! If I have a fall (2 last Saturday) I sound like a maraca (LOL) I also make sure that I have a glass of win (or 2) and a whiskey ( so much for the Baclofen). By the way I lost that tooth from last week and I have recovered my speech very quickly. As a footnote the last time I saw my neurologist, he thought that I was doing much better with my symptoms..... Lots of love from KP's Kingdom down under.
Well good morning my friend! I had this zapping leg thingy happen a couple weeks ago with my left leg. It's so annoying isn't it? Re: Baclofen...zombies me out and gives me horrendous nightmares😖 so Tizanidine, for me is better. Praying for you and Teresa that you two turn the corner through these challenges sooner than soon. And also for the rest of us🙏🏻.
I'm so very sorry to hear of the loss of your Dad. "One day at a time and baby steps" as my sister would say, and it is written... "Be strong and courageous. Do not be AFRAID Do not be DISCOURAGED For the Lord your God will be with you WHEREVER YOU GO" Joshua 1:9
I wish that we didn't live so far away! My husband Jay asked the other day if I had heard anything from you lately. He and I both care deeply about you both. You have helped me and no doubt many others out there during our shared frustrations with our physical challenges. Continue to be strong and reach out to those who genuinely care and want to give to you what you give to us! Never ever give up and know that you are loved❣️ Sincerely, Elaine
Wow! You just described EXACTLY what I experience. My spasms always come on as I'm just about to drift off to sleep. They are usually in one leg, mostly my right, but some nights it's my left. My quadricep that squeezes and releases. I like what you said about it feeling like a sneeze about to happen. I have this "warning sensation" also. It feels like a shock. Like when a doctor tests your reflexes, .it's an almost intolerably ticklish feeling. And it happens every twenty or so seconds. Once they start, they usually lasts an hour and then they suddenly turn off. I can't figure out what triggers these, as they don't happen every night. It seems like there's no rhyme or reason. Anyway, I wanted to say thank you for sharing. I struggle to describe this to my doctors and friends. And coming across this was very helpful. I don't have MS, but I have a spinal cord injury caused by years of severe cervical stenosis.
Hey there, thank you so much for getting in contact. Out of all of the pain, weakness and disability I have to cope with, to have the leg spasms on top is just the worst thing. I absolutely cannot cope with them. The way you describe them also is perfect, definitely intolerable. For me though there is a pattern. It's usually when I'm tired and lethargic, this seems to be the trigger. When my leg 'starts', like you it's every 15 or 20 seconds. I had Covid in Feb 2023, and the spasms increased in intensity significantly. My leg would jump so VIOLENTLY my whole body would lurch upwards, it was incredibly wearing and debilitating, not to mention depressing. The only way I could stop them was to use the muscle, this meant whatever the time I would have to walk about, unfortunately now that is easier said than done as my illness is much advanced now, and walking is very challenging for me shall we say. However.. I do feel I've discovered something that has helped me, and honestly I've not had a spasm now for several weeks. It's a supplement call "Calcium and Magnesium", the magnesium I believe meant to improve the nerve impulse connections. I'm not really one for trying supplements, but sometime one gets so desperate you'll try anything. Please give them a go and see if it makes any difference for you. I honestly believe they have worked for me. You take take care, all the best - Neil.
@@NeilBradleyMS It's also interesting how you and I both get them just as we are about to drift off to sleep. They only appear for me at that time. But I think you also mentioned that yours wakes you from sleep as well. Thanks for the tip. I will have to try the supplement. I bought something called "CALM" which I believe has both magnesium and calcium in it but haven't tried it yet. I had the worst bout of spasms the other night after a long day of overdoing it. I have been prescribed muscle relaxers, but don't like the way they make me feel the next day. Dealing with an hour of spasms makes me less tired than the medication side effects. But it sucks!
I also do not like the way muscle relaxers make me feel, in fact I’m unable to take them. I already have a lot of weakness, and all they do is make me weaker and more prone to falls. I do hope the supplement works for you. I honestly feel it has made a positive effect with me.
Thank you for telling us the truth about your situation. Getting through the night hours is such a challenge. I am awake at 2:30 then I may drift off again until about 4:30. My husband does not like it if I just get up. Some nights that's the only way. I have trouble turning my mind off. Hang in there. I think doctors do give up on us. There are just no meds to solve these problems.
I'm sorry you're having to deal with this.. it's really not nice. I hear what you say about your husband not liking it and disturbing his sleep. I think that maybe your husband needs to consider how it is effecting your sleep and ultimately your mental health. We all NEED sleep, if we don't get it we cannot function properly. If you're able, and perhaps have a spare room, it might be worth considering sleeping there, this way both of you are able to get quality sleep. Take care.
Discovered you through a comment you left for me about my little finch memory I shared under an NDE video. Though I am many miles from you and cannot compare my journey to yours, perhaps it will help knowing you have company across the pond when it comes to experiencing interrupted nights. Seeing the clock makes it worse for me; hiding it doesn't help. Sometimes I can't wait for the day to be over so I can get right back to bed. But then the cycle often starts again. This is a silly way to try to bring you some comfort, but it just might, knowing there are more of us who are 'owls' for one reason or another. Peace to you and your wife.
Hey there, yes I recall the comment I left for you reference the Finch. Nice to see you over here on my channel. Im sorry to hear that you also have very bad nights. My sleep isn’t too bad at the moment, but that can change quickly. I love watching the NDE videos, they really do bring great comfort. I hope you too get a lot out of watching them. 🙏
@justyne8627 Thank you so much for your kind words. Quite fascinating that strange phenomenon should occur just prior to you loosing a loved one. I do however recognise that this can also be very distressing in the knowing somebody is close to crossing over. Oh yes, isn’t it just so easy to talk yourself out of it, no doubt about it. I’d like to recommend a RUclips channel to you if I may, it’s called “Off The Left Eye”.. it’s brilliant. It’s all about the afterlife, but it follows the teaching of somebody called Emanuel Swedenborg in the 18th century. He was an inventor and scientist, but at the age of 53 he had a Spiritual Awakening, and he was able to literally visit the Spiritual World whenever he wanted to. The reason I find it so fascinating is because scientific, logical, and analytical minds don’t easily ‘believe’. They always need significant proof. There are hundreds of educational videos, it helps me really reinforce the knowing there absolutely is something fantastic worth waiting for. 🦋🙏
Thank you! I am looking into that website; right up my alley. Knowing more about what's to come might explain what all this here is about. Plus, unless I'm fated to compete with denizens of the Old Testament, my life is more than 1/2 over - the line is moving up to...where? I'd like to know. One morning, when my Dad was lying in bed being cared for a nurse, I was forced to admit to myself I was losing him (he had become my best friend). I didn't make a noise; held back tears. Without opening his eyes, without otherwise moving, he then said in a clear voice, 'Don't be afraid. I'll always watch over you.' And he does. Things happen I just cannot explain. Blessings 🐦@@NeilBradleyMS
Bless you🙏, thank you for sharing that experience with Dad.. it must be lovely to know he is just a breath away, looking over you, keeping you safe. Difficult nevertheless, loosing him from this physical world. Like yourself, my years have past the half way point but my health is poor, so I too find myself thinking about what is next. I definitely think the answer is in these NDE videos, and I very much agree with the thinking of the afore mention RUclips channel.
Hello Neil, just checking in wondering how you and Teresa are doing. Here in Italy high temperatures mean increased pain and lack of sleep which I know you can relate to as for its annoying consequences. I bet you are not doing great but I know you are still hanging on. Give us an update whenever you feel like it. Ciao!
@@kara7197 Hi Kara, it’s kind of you to check in on us, thank you. You are quite right, I’m not doing good, this last few months I’ve seen quite significant decline in my mobility. It never seems to end. I hope you’re doing better than me. Lovely to hear from you. Take care in that heat. 🙏
So sorry you are having a bad night again, Neil. I wonder if there is another muscle relaxer with fewer side effects, though I guess you have tried them all. I do see a comment about a different one. I cannot function without sleep. I did go without much one time and it was awful to not be able to think and have delusions. It can be scary. Could you take some muscle relaxer for a week and catch up on your sleep and you might feel more restful and have some peace. A trade off, I know but just for a little while. Thinking of you and Teresa. Merry Christmas to you both. Thank you for sharing your night. 💚💚
Thoughts and prayers Neil 🙏❤️ What does the doctor say about this? Have they given you any advice?? This is very upsetting to hear all of this. Prayers to Theresa also ❤
To be honest Kelly, I've given up with the Dr's .. I don't feel there is anything else they can offer me. I just use them as a tool now, to help with what I feel is best for myself. I listen to what they have to say, take it on board, but make my own decision about medication. It really annoys me how they will often prescribe something and encourage you to go up to the max dose when clearly this is often crazy for someone like myself with so much muscle weakness. I often find they have no common sense.
Oh hon! I'm so sorry you're having it so rough. My main lesions are on my spine. C2 and C6 . Baclofen is all I've been able to take thus far. Everything else has messed with my heart and we can't afford that. Maybe you could do Baclofen only overnight? You don't have to walk if you are able to sleep... I know hush up. I just wish there was something I could offer. But I do totally understand the frustration and feeling of helplessness. Hugs to you both. I think of you all the time. I care very very much! I hope you can get some rest. (you never have to respond to me... it's perfectly fine. I promise)
You're so very kind, and I thank you for your caring thoughts and words. I did use Baclofen when the spasms were incredibly violent when I was ill for almost 4 months with Covid. They were so severe, my leg would jump and it felt like my whole body would just about leave the bed. Baclofen helped, didn't work completely, but it did help. The only problem is, these drugs stay in your system for a certain amount of time and can do lasting damage. I feel this has happened with me, but at the time I did not have any choice, as during Covid everything was so amplified. As always lovely to hear from you, I hope you feeling as well as can be. Look after yourself. xx
Neil I just discovered something simple that might help a little bit. My oldest son gifted me a very heavy Mexican woven blanket. I put it on my bed last night and for the first time in weeks I had no leg pain nor arm pain. I slept quietly for the first time in quite a while. Maybe you could get a weighted blanket and try it? My legs alternate in which one wakes me. Last night there was no pain at all! Just a thought.@@NeilBradleyMS
Thank you for your honesty. I have Myasthenia Gravis is a lot less severe than MS but the symptoms sound similar to what i go through. Ive alsways tht i had MS and am so grateful not too but yr not supposed to get the shocks you are describing and they are one of the most disturbing part of my illness. Im still not convinced its not MS but noone has ever mentioned a lesion except for a cyst on my spine thats left a scar???
Hi Dianne, I've heard of Myasthenia Gravis but I couldn't remember the symptoms so I've done a quick Google. It sounds just horrible, I'm really sorry to hear that you're having to deal with this. If something (a cist) has left a scar on you're spinal cord, I don't think it matters what has caused it, the scarring will unfortunately disrupt the communication of information from your brain, via the spinal cord to the area of your body it effectively 'talks' to. I'm no Dr but I suspect the scar that has showed up will most definitely be causing the 'shocks' that you describe. It might be worth asking your Dr about this and getting it verified.
@NeilBradleyMS thanks so much for your reply. I'm seeing him in January so will add it to my list of questions! Today I've had a "fuzzy" feeling when I touch my face just on one side like a dental anaesthetic is almost worn off - weird! Can't say numbness but almost?
Hey Neil, sorry long time no message. Sorry to hear you are having a tough time😢 at the moment. Like your digital wall clock, I have one too. They are cool😅. Question for you since your MS has progressed do you find your consultant has given up on you ? Since I changed to SPMS I have not seen my consultant, just the junior doctors, maybe its me, its like we can't do anymore for me and waved a white flag,and I never see my MS nurse either, I wish you both a merry Christmas, 🎉 I know life is challenging for you at moment 😢
Hello Indie, nice to hear from you. In answer to your question, that is a resounding YES .. they only call me in once a year, do the usual Neuro exam, and sometimes send me for steroids. Well, I've decided I'm no longer having steroids because they have ceased to work or have very little effect now. I'm not putting myself through it. She will asses my medication which I change to suit myself anyway. I'm positive they are at the end of what they can do for me, I'm even considering stopping my appointments because I'd rather not have the struggle of getting there. I can see me stopping in maybe another 2 - 3 years time.
Have you looked into Trt? Im 40 and experiencing ms symptoms and have seen that trt is extremely helpful in treating ms in men. Im going to get my t levels checked soon. Also i dont know what prescription meds you are taking but Ativan really helps with sleep and relieves the shocks and tingling...ativan is a dangerously addictive drug though so only taking it a couple times a week is advised
Nope haven’t tried TRT, I know this might sound like a cop out but I’m in too much pain, too weak and too worn out and tired to try anything else. Every day is a struggle.
I’m in the exact same boat! Does sugar affect you in terms of neuropathy immediately following eating something sweet im just curious what your diet is like ? Thanks brother
Not so much sugar, but just food in general. Creates something called Uhthoff’s phenomenon, Google it or I’ve got a couple of older videos on it. I think you will be surprised.
Hi Neil And Mrs Neil 🤠 I agree with you💯o/o Neil with baclofen, I have stopped taking it twice now, noy happy with it kind regards to you and the Mrs, 🤠Qld Au
Hi there, Baclofen did help when my leg spasms were very violent. Since then they have calmed down and I’ve stopped taking it. What the Doctor’s fail to tell people is, if you already have weak muscles, Baclofen will worsen them significantly. Take care.
Already tried Magnesium, tried pretty much everything with no results. I think my condition is too severe which is why I don't respond to things. Over the years I've tried lots of different suggestions, but to no avail. I do thank you though for your suggestion.
I'm sure it's been something mentioned or you've looked into it, but have you can considered the baclofen pump, which is implanted internally in your lower abdomen area under the skin? This then administers baclofen directly to your spinal cord, which causes no side effects because you're not ingesting it into your bloodstream. I actually had a baclofen pump trial done and it worked pretty successfully, but I am still taking the pills. This may greatly affect your sleep and could be very beneficial. I'm not sure if it's offered in the UK, but in the US, it's common. And they can then program it to release at certain times. It sounds like you would need more during the late night to relax your legs.
There is medication (Baclofen) which helps, but the consequence of the is it significantly weakens me further. So the little bit of mobility I do have much worsens, so I feel I can't take it. However, when I had Covid the spasms were so violent and debilitating, I did take the Baclofen. It didn't stop them completely, but it did ease them off.
Weak leg muscles plus muscle relaxers don't make sense. Still, I am on baclofen 10mg 2 or 3 x daily. A large(safe) amount of Baclofen can indeed help at night with sleep, so there's that. Insufficient sleep is a horrible thing to deal with. ❤
Hi Lee, when I had Covid, the spasms were absolutely horrendous and intolerable, they were so violent my whole body would jump when I was sleeping. Baclofen at the time did help, but since then I've weened myself off it because as you quite rightly say, weak leg muscles and muscle relaxer do not make any sense YET Doctors still prescribe them to us. You take care my friend. xx
What about trying a very low dose of Baclofen, to cut some of the leg spasms, but not enough to make your muscles wobbly? I am very allergic to most drugs, but I tried a very low dose of Baclofen and even that really helped the spasticity in my legs. It might be worth a try! 🙏❤️
Hi Suki, that is always an option yes, and thank you. I measure the severity of the spasms by how many times a week I have to get up and come down stairs. At the moment it averages 1 - 2 times maybe, then I'll have several weeks when I'm ok. But That is always an option to fall back on, thank you.
I am so sorry for you for this. I don’t know if this will help you, but it helps me with nighttime leg cramps. It is a homeopathic cure: Hylands Natural Relief Leg Cramp Tablets.
Thank you so much for thinking of me. I think I’m finally in a place I’ve got them relatively under control. For me I find magnesium & calcium works very well.👍
Es tut mir wirklich leid zu hören, dass Sie MS haben, es ist wirklich beängstigend. Es ist gut, dass du dir andere Menschen suchst, die dir Hilfe, Trost und Rat bieten können. Bitte passen Sie auf sich auf.
Cannabis ingested, oil of bud. You body has cannabinoid receptors, can help synapses fire properly .
I just got my first full dose of Ocrevus. Didn't sleep much last night. I hope this makes me feel better. Continuing to pray for both of you.❤
@@kathycollett4942 Hi Kathy, that is a very brave step forwards, well done you. The Ocrevus will keep suppressed the part of your immune system believed to be responsible for MS attackes. It works really well and should slow down any further attacks. Proud of you 👍 💛🙏
Sadly, as we age with this condition, everything kind of gets to this level of intolerable. I just sit and cry in my chair.
Someone gave me the advice to take a long walk so i'd sleep better, and i literally laughed out loud.
Sorry also to hear about Teresa's pain. Hour by hour we take it, sometimes, minute by minute, but we DO hold on, yes? We just do.
Hi Elaine, yes indeed we do.. often it is hour by hour and sometimes we don't know how we're going to get through the day. Alas, each morning we wake up to face yet another one. Take care.
Magnesium specifically L-Threonate Magnesium no joke Picklejuce wonders
Oh Neil, my heart goes out to you. Sleep,is such a necessary part of health and wellbeing. Sending you both virtual hugs and good mojo.
I am sending my thoughts and prayers to you, stay positive and strong. If it makes you feel any better, my life is a nightmare. I spend everyday with the most intense dull aching pressure that sometimes can feel tingling/tickling or having 40lbs of crushing weight sitting on my left side. This pain is there whether I exercise or not, it's just permanently attached to me. I just did 3 MRI's a couple days ago, and now I am awaiting my test results. Everyday I have to calm myself down and say "you went to two cardiologists and did every heart test possible". I will give you an update when I get my results.
Dear Neil and Tree, I'm wishing you both a peaceful Christmas
I'm so sorry this keeps happening to you Neil. I wish I could do something for you. All I can do is pray that it eases for you so you can sleep. I have insomnia. Have since my 20s and i still do. I get 6 hours on a good day and even less most of the time not from my MS just because... I understand somewhat. Oh and now I'm in my 50s so it's been a struggle for years. Suggestions sleep when you can even if it's a power nap in the day time. I find for myself my body will doze off for 15 minutes out of nowhere just shuts me down no choice. I think it's out of nessity. Just be open to take a nap in the day if you feel it. I'm not saying this is forever just for now until it calms down for you. I hope this will help you. Take care of yourself. God bless you and Teresa. Peace. 😇😊🤗😔😟
I'm keeping you both in my thoughts and prayers.
Neil my thoughts go out to you. It's madness not being able to sleep through spasms I used to get them in my right leg the way you explain yours. I'm so lucky that the baclofen worked for me and so sorry it doesn't for you. Sending positive thoughts to you and Theresa.
Oh Neil!! Bloody RUclips didn’t send me an alarm for this or your last video! I just fell over this one … by being up, unable to sleep…and with similar problems, but for me it’s mainly in my right leg. I’m so sorry I’ve been AWOL lately. Life…just gets in the way sometimes. I’m so sorry to hear your legs are weakening and the spasms and pains are so much worse. It’s tough being in pain and being sick - and not being able to sleep..makes everything worse. As I’m typing this I m wondering if you are up again, in pain and exhausted. Much love to Teresa 🎄 too… Have the best Christmas Day possible. ❤️❤️🎄❤️❤️
Intrathecal Baclofen pump that delivers micro dose of the medication directly into the spinal cord, retaining leg strength, but massive reduction of spasms...
praying for neil, plz join
This has only just popped up for me ..wishing you both well ❤
Hello Neil. So sorry for the two of you. I have limb disorder movement. For me, an ice pack on lower spine helps me some. I had a seizure due to lack of sleep. Again, I am so sorry. M..H.
Hello Melinda, this sounds just horrible.. and I can well imagine how the body would react with a seizure due to lack of sleep. I do hope you're managing to sleep somewhat better now.
Sorry to see you’re sitting in your living room at 4.30 😞and poor Theresa too.. I’m not sure I’m going to make it to the loo when I wake in the night as the numbness which started in one foot has spread to both legs now, I hope you managed to enjoy some RuneScape and you were able to get more sleep, we have to take the rest when we can get it 😞🙏🏻xx
❤ it is so unfair that you have to deal with this I feel for you just want to send you both so much love and wish you a Merry Christmas XX
Praying that you will be able to get some sleep and that your pain goes away.🙏❤️🤗
Thank you Kathy, things have calmed down somewhat but I never know when it’s going to get bad again. I think that is probably a boat we have all been in.
Hey Neil, K.P here again, the MS gods must be out and about again. Last night I was spasming badly as well. Mine start in my toes and then shoot up to my thighs. I had nightmares when I did fall asleep with the help of some antitime's, but the temperature here in Australia has been hot and it makes it hard to stay comfortable. So with little sleep I was a mess today (I am writing this 1 hour after the video went live and it is 5.30pm) Spasms from my neck down to my fingers. Don't do Baclofen! It was designed to help people stop drinking alcohol and can also give you nightmares and even suicide. I tried it and it made me worse, gave up after 4 days. I use the following to help me sleep, Melatonin 2mg, Magnesium 400mg 5 a day for spasms (spread out). Lipoic Acid 300mg twice a week ( helps reduce brain swelling and it also is a very powerful anti oxidant) I also use celery seed for inflammation and cranberry to help with possible UTI's, That is just the start! If I have a fall (2 last Saturday) I sound like a maraca (LOL) I also make sure that I have a glass of win (or 2) and a whiskey ( so much for the Baclofen). By the way I lost that tooth from last week and I have recovered my speech very quickly. As a footnote the last time I saw my neurologist, he thought that I was doing much better with my symptoms..... Lots of love from KP's Kingdom down under.
Well good morning my friend! I had this zapping leg thingy happen a couple weeks ago with my left leg. It's so annoying isn't it? Re: Baclofen...zombies me out and gives me horrendous nightmares😖 so Tizanidine, for me is better.
Praying for you and Teresa that you two turn the corner through these challenges sooner than soon. And also for the rest of us🙏🏻.
Have they checked your B12 level? Mine was low and I started taking a supplement which seems to help some with some of my "weird" body issues
Hey you two, you are truly missed!!!!!
Hope you are both doing well❣️
Miss you Both😘
We’ve been better, my Dad has recently passed away so the last few weeks have been quite traumatic. Thank you for reaching out though. 💛🙏
I'm so very sorry to hear of the loss of your Dad. "One day at a time and baby steps" as my sister would say,
and it is written...
"Be strong and courageous.
Do not be AFRAID
Do not be DISCOURAGED
For the Lord your God will be with you
WHEREVER YOU GO"
Joshua 1:9
I wish that we didn't live so far away!
My husband Jay asked the other day if I had heard anything from you lately. He and I both care deeply about you both. You have helped me and no doubt many others out there during our shared frustrations with our physical challenges.
Continue to be strong and reach out to those who genuinely care and want to give to you what you give to us! Never ever give up and know that you are loved❣️
Sincerely,
Elaine
ruclips.net/video/bJZ5FIWWQXQ/видео.html&si=A1Uc0vCfjAsXpRn9
@@EMS-hp9tf Thank you so much Elaine, your words mean a lot to me. Blessings to you and your husband 🙏🌷
Wow! You just described EXACTLY what I experience. My spasms always come on as I'm just about to drift off to sleep. They are usually in one leg, mostly my right, but some nights it's my left. My quadricep that squeezes and releases. I like what you said about it feeling like a sneeze about to happen. I have this "warning sensation" also. It feels like a shock. Like when a doctor tests your reflexes, .it's an almost intolerably ticklish feeling. And it happens every twenty or so seconds. Once they start, they usually lasts an hour and then they suddenly turn off. I can't figure out what triggers these, as they don't happen every night. It seems like there's no rhyme or reason. Anyway, I wanted to say thank you for sharing. I struggle to describe this to my doctors and friends. And coming across this was very helpful. I don't have MS, but I have a spinal cord injury caused by years of severe cervical stenosis.
Hey there, thank you so much for getting in contact. Out of all of the pain, weakness and disability I have to cope with, to have the leg spasms on top is just the worst thing. I absolutely cannot cope with them. The way you describe them also is perfect, definitely intolerable. For me though there is a pattern. It's usually when I'm tired and lethargic, this seems to be the trigger. When my leg 'starts', like you it's every 15 or 20 seconds. I had Covid in Feb 2023, and the spasms increased in intensity significantly. My leg would jump so VIOLENTLY my whole body would lurch upwards, it was incredibly wearing and debilitating, not to mention depressing. The only way I could stop them was to use the muscle, this meant whatever the time I would have to walk about, unfortunately now that is easier said than done as my illness is much advanced now, and walking is very challenging for me shall we say.
However.. I do feel I've discovered something that has helped me, and honestly I've not had a spasm now for several weeks. It's a supplement call "Calcium and Magnesium", the magnesium I believe meant to improve the nerve impulse connections. I'm not really one for trying supplements, but sometime one gets so desperate you'll try anything. Please give them a go and see if it makes any difference for you. I honestly believe they have worked for me.
You take take care, all the best - Neil.
@@NeilBradleyMS It's also interesting how you and I both get them just as we are about to drift off to sleep. They only appear for me at that time. But I think you also mentioned that yours wakes you from sleep as well. Thanks for the tip. I will have to try the supplement. I bought something called "CALM" which I believe has both magnesium and calcium in it but haven't tried it yet. I had the worst bout of spasms the other night after a long day of overdoing it. I have been prescribed muscle relaxers, but don't like the way they make me feel the next day. Dealing with an hour of spasms makes me less tired than the medication side effects. But it sucks!
I also do not like the way muscle relaxers make me feel, in fact I’m unable to take them. I already have a lot of weakness, and all they do is make me weaker and more prone to falls. I do hope the supplement works for you. I honestly feel it has made a positive effect with me.
Thank you for telling us the truth about your situation. Getting through the night hours is such a challenge. I am awake at 2:30 then I may drift off again until about 4:30. My husband does not like it if I just get up. Some nights that's the only way. I have trouble turning my mind off.
Hang in there. I think doctors do give up on us. There are just no meds to solve these problems.
I'm sorry you're having to deal with this.. it's really not nice. I hear what you say about your husband not liking it and disturbing his sleep. I think that maybe your husband needs to consider how it is effecting your sleep and ultimately your mental health. We all NEED sleep, if we don't get it we cannot function properly. If you're able, and perhaps have a spare room, it might be worth considering sleeping there, this way both of you are able to get quality sleep. Take care.
Discovered you through a comment you left for me about my little finch memory I shared under an NDE video. Though I am many miles from you and cannot compare my journey to yours, perhaps it will help knowing you have company across the pond when it comes to experiencing interrupted nights. Seeing the clock makes it worse for me; hiding it doesn't help. Sometimes I can't wait for the day to be over so I can get right back to bed. But then the cycle often starts again. This is a silly way to try to bring you some comfort, but it just might, knowing there are more of us who are 'owls' for one reason or another. Peace to you and your wife.
Hey there, yes I recall the comment I left for you reference the Finch. Nice to see you over here on my channel. Im sorry to hear that you also have very bad nights. My sleep isn’t too bad at the moment, but that can change quickly. I love watching the NDE videos, they really do bring great comfort. I hope you too get a lot out of watching them. 🙏
@justyne8627 Thank you so much for your kind words. Quite fascinating that strange phenomenon should occur just prior to you loosing a loved one. I do however recognise that this can also be very distressing in the knowing somebody is close to crossing over. Oh yes, isn’t it just so easy to talk yourself out of it, no doubt about it.
I’d like to recommend a RUclips channel to you if I may, it’s called “Off The Left Eye”.. it’s brilliant. It’s all about the afterlife, but it follows the teaching of somebody called Emanuel Swedenborg in the 18th century. He was an inventor and scientist, but at the age of 53 he had a Spiritual Awakening, and he was able to literally visit the Spiritual World whenever he wanted to. The reason I find it so fascinating is because scientific, logical, and analytical minds don’t easily ‘believe’. They always need significant proof. There are hundreds of educational videos, it helps me really reinforce the knowing there absolutely is something fantastic worth waiting for. 🦋🙏
Thank you! I am looking into that website; right up my alley. Knowing more about what's to come might explain what all this here is about. Plus, unless I'm fated to compete with denizens of the Old Testament, my life is more than 1/2 over - the line is moving up to...where? I'd like to know. One morning, when my Dad was lying in bed being cared for a nurse, I was forced to admit to myself I was losing him (he had become my best friend). I didn't make a noise; held back tears. Without opening his eyes, without otherwise moving, he then said in a clear voice, 'Don't be afraid. I'll always watch over you.' And he does. Things happen I just cannot explain. Blessings 🐦@@NeilBradleyMS
Bless you🙏, thank you for sharing that experience with Dad.. it must be lovely to know he is just a breath away, looking over you, keeping you safe. Difficult nevertheless, loosing him from this physical world. Like yourself, my years have past the half way point but my health is poor, so I too find myself thinking about what is next. I definitely think the answer is in these NDE videos, and I very much agree with the thinking of the afore mention RUclips channel.
@@NeilBradleyMS ❤ (I don't see the heart option next to my thumbs up/down in RUclips. So I improvise. I am challenged by social media technology.)
Hello Neil, just checking in wondering how you and Teresa are doing. Here in Italy high temperatures mean increased pain and lack of sleep which I know you can relate to as for its annoying consequences. I bet you are not doing great but I know you are still hanging on. Give us an update whenever you feel like it. Ciao!
@@kara7197 Hi Kara, it’s kind of you to check in on us, thank you. You are quite right, I’m not doing good, this last few months I’ve seen quite significant decline in my mobility. It never seems to end. I hope you’re doing better than me. Lovely to hear from you. Take care in that heat. 🙏
So sorry you are having a bad night again, Neil. I wonder if there is another muscle relaxer with fewer side effects, though I guess you have tried them all. I do see a comment about a different one. I cannot function without sleep. I did go without much one time and it was awful to not be able to think and have delusions. It can be scary. Could you take some muscle relaxer for a week and catch up on your sleep and you might feel more restful and have some peace. A trade off, I know but just for a little while. Thinking of you and Teresa. Merry Christmas to you both. Thank you for sharing your night. 💚💚
What about Uplizna (inebilizumab-cdon) for a treatment?
Thoughts and prayers Neil 🙏❤️ What does the doctor say about this? Have they given you any advice?? This is very upsetting to hear all of this. Prayers to Theresa also ❤
To be honest Kelly, I've given up with the Dr's .. I don't feel there is anything else they can offer me. I just use them as a tool now, to help with what I feel is best for myself. I listen to what they have to say, take it on board, but make my own decision about medication. It really annoys me how they will often prescribe something and encourage you to go up to the max dose when clearly this is often crazy for someone like myself with so much muscle weakness. I often find they have no common sense.
Oh hon! I'm so sorry you're having it so rough. My main lesions are on my spine. C2 and C6 . Baclofen is all I've been able to take thus far. Everything else has messed with my heart and we can't afford that. Maybe you could do Baclofen only overnight? You don't have to walk if you are able to sleep... I know hush up. I just wish there was something I could offer. But I do totally understand the frustration and feeling of helplessness. Hugs to you both. I think of you all the time. I care very very much! I hope you can get some rest. (you never have to respond to me... it's perfectly fine. I promise)
You're so very kind, and I thank you for your caring thoughts and words. I did use Baclofen when the spasms were incredibly violent when I was ill for almost 4 months with Covid. They were so severe, my leg would jump and it felt like my whole body would just about leave the bed. Baclofen helped, didn't work completely, but it did help. The only problem is, these drugs stay in your system for a certain amount of time and can do lasting damage. I feel this has happened with me, but at the time I did not have any choice, as during Covid everything was so amplified. As always lovely to hear from you, I hope you feeling as well as can be. Look after yourself. xx
Neil I just discovered something simple that might help a little bit. My oldest son gifted me a very heavy Mexican woven blanket. I put it on my bed last night and for the first time in weeks I had no leg pain nor arm pain. I slept quietly for the first time in quite a while. Maybe you could get a weighted blanket and try it? My legs alternate in which one wakes me. Last night there was no pain at all! Just a thought.@@NeilBradleyMS
Hi There, I'm so please you got some relief from the pain with your blanket. It's whatever works well for you isn't it. Brilliant.
Thank you for your honesty. I have Myasthenia Gravis is a lot less severe than MS but the symptoms sound similar to what i go through. Ive alsways tht i had MS and am so grateful not too but yr not supposed to get the shocks you are describing and they are one of the most disturbing part of my illness. Im still not convinced its not MS but noone has ever mentioned a lesion except for a cyst on my spine thats left a scar???
Hi Dianne,
I've heard of Myasthenia Gravis but I couldn't remember the symptoms so I've done a quick Google. It sounds just horrible, I'm really sorry to hear that you're having to deal with this. If something (a cist) has left a scar on you're spinal cord, I don't think it matters what has caused it, the scarring will unfortunately disrupt the communication of information from your brain, via the spinal cord to the area of your body it effectively 'talks' to. I'm no Dr but I suspect the scar that has showed up will most definitely be causing the 'shocks' that you describe. It might be worth asking your Dr about this and getting it verified.
@NeilBradleyMS thanks so much for your reply. I'm seeing him in January so will add it to my list of questions! Today I've had a "fuzzy" feeling when I touch my face just on one side like a dental anaesthetic is almost worn off - weird! Can't say numbness but almost?
Hey Neil, sorry long time no message. Sorry to hear you are having a tough time😢 at the moment. Like your digital wall clock, I have one too. They are cool😅. Question for you since your MS has progressed do you find your consultant has given up on you ? Since I changed to SPMS I have not seen my consultant, just the junior doctors, maybe its me, its like we can't do anymore for me and waved a white flag,and I never see my MS nurse either, I wish you both a merry Christmas, 🎉 I know life is challenging for you at moment 😢
Hello Indie, nice to hear from you. In answer to your question, that is a resounding YES .. they only call me in once a year, do the usual Neuro exam, and sometimes send me for steroids. Well, I've decided I'm no longer having steroids because they have ceased to work or have very little effect now. I'm not putting myself through it. She will asses my medication which I change to suit myself anyway. I'm positive they are at the end of what they can do for me, I'm even considering stopping my appointments because I'd rather not have the struggle of getting there. I can see me stopping in maybe another 2 - 3 years time.
Have you looked into Trt? Im 40 and experiencing ms symptoms and have seen that trt is extremely helpful in treating ms in men. Im going to get my t levels checked soon. Also i dont know what prescription meds you are taking but Ativan really helps with sleep and relieves the shocks and tingling...ativan is a dangerously addictive drug though so only taking it a couple times a week is advised
Nope haven’t tried TRT, I know this might sound like a cop out but I’m in too much pain, too weak and too worn out and tired to try anything else. Every day is a struggle.
I’m in the exact same boat! Does sugar affect you in terms of neuropathy immediately following eating something sweet im just curious what your diet is like ? Thanks brother
Not so much sugar, but just food in general. Creates something called Uhthoff’s phenomenon, Google it or I’ve got a couple of older videos on it. I think you will be surprised.
Hi Neil And Mrs Neil 🤠 I agree with you💯o/o Neil with baclofen, I have stopped taking it twice now, noy happy with it
kind regards to you and the Mrs, 🤠Qld Au
Hi there, Baclofen did help when my leg spasms were very violent. Since then they have calmed down and I’ve stopped taking it. What the Doctor’s fail to tell people is, if you already have weak muscles, Baclofen will worsen them significantly. Take care.
Neil look up magnesium benefits with out calcium and pink sea salt in your water let me know if it helps god bless
Already tried Magnesium, tried pretty much everything with no results. I think my condition is too severe which is why I don't respond to things. Over the years I've tried lots of different suggestions, but to no avail. I do thank you though for your suggestion.
Omg how much you can take 🙏😞
Without sleeping s terrible
💛🙏
I'm sure it's been something mentioned or you've looked into it, but have you can considered the baclofen pump, which is implanted internally in your lower abdomen area under the skin? This then administers baclofen directly to your spinal cord, which causes no side effects because you're not ingesting it into your bloodstream. I actually had a baclofen pump trial done and it worked pretty successfully, but I am still taking the pills. This may greatly affect your sleep and could be very beneficial. I'm not sure if it's offered in the UK, but in the US, it's common. And they can then program it to release at certain times. It sounds like you would need more during the late night to relax your legs.
Merry Christmas to you both. My spasms have been off the charts too... just so scary!!
have you maybe discussed this with your doctor to see if there is any medication or something that can stop the spasm?
There is medication (Baclofen) which helps, but the consequence of the is it significantly weakens me further. So the little bit of mobility I do have much worsens, so I feel I can't take it. However, when I had Covid the spasms were so violent and debilitating, I did take the Baclofen. It didn't stop them completely, but it did ease them off.
Weak leg muscles plus muscle relaxers don't make sense. Still, I am on baclofen 10mg 2 or 3 x daily. A large(safe) amount of Baclofen can indeed help at night with sleep, so there's that. Insufficient sleep is a horrible thing to deal with. ❤
Hi Lee, when I had Covid, the spasms were absolutely horrendous and intolerable, they were so violent my whole body would jump when I was sleeping. Baclofen at the time did help, but since then I've weened myself off it because as you quite rightly say, weak leg muscles and muscle relaxer do not make any sense YET Doctors still prescribe them to us. You take care my friend. xx
What about trying a very low dose of Baclofen, to cut some of the leg spasms, but not enough to make your muscles wobbly? I am very allergic to most drugs, but I tried a very low dose of Baclofen and even that really helped the spasticity in my legs. It might be worth a try! 🙏❤️
Hi Suki, that is always an option yes, and thank you. I measure the severity of the spasms by how many times a week I have to get up and come down stairs. At the moment it averages 1 - 2 times maybe, then I'll have several weeks when I'm ok. But That is always an option to fall back on, thank you.
I am so sorry for you for this. I don’t know if this will help you, but it helps me with nighttime leg cramps. It is a homeopathic cure: Hylands Natural Relief Leg Cramp Tablets.
Thank you so much for thinking of me. I think I’m finally in a place I’ve got them relatively under control. For me I find magnesium & calcium works very well.👍
@@NeilBradleyMS I’m so happy about that! ❤️
@@2youngbon2 Thank you, I do hope that you're also managing ok. 🙏
@@NeilBradleyMS ok so far. Do you now that song “The Sun Will Come Out Tomorrow?” Love that. It keeps going through my head.
@@2youngbon2 Yes, I do know that one, I like it too. Chronic illness certainly isn’t easy. Good to hear you are ok 👌
Guten Morgen wie lang hast du schon ms
I’ve had ms since 2013, but my diagnosis changed in 2019 to neuromyelitis optica or NMO.
Danke für deine Antwort, ich Kämpfe Grade mit Ängsten was in Zukunft auf mich zukommt
Hast du schon mir Dehnen und Sport probiert
Wenn so schlimm 1mg Tavor Tablette 💊
Es tut mir wirklich leid zu hören, dass Sie MS haben, es ist wirklich beängstigend. Es ist gut, dass du dir andere Menschen suchst, die dir Hilfe, Trost und Rat bieten können. Bitte passen Sie auf sich auf.
Neil I wonder would a sleeping tablet help you to get sleep at night.
Hi there, I already take Amitriptyline which has a side effect of drowsiness.. it does work to some degree to be honest.