Multiple Sclerosis Relapse: Spasms
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- Опубликовано: 20 июн 2024
- #multiplesclerosis #relapse #spasms
I am going through a relapse with intense spasms and I need to share how this feels right now...
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Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system). In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerves. Signs and symptoms of MS vary widely and depend on the amount of nerve damage and which nerves are affected. Some people with severe MS may lose the ability to walk independently or at all, while others may experience long periods of remission without any new symptoms. There's no cure for multiple sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease, and manage symptoms.
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Hang in there Seb. Contact your doc. A relapse is breakaway disease which shouldnt happen if medication works!
Came across a video like 2yrs ago about how a keto diet helps with autoimmune diseases. I thought to myself that was ridiculous and stupid. Had another flare last year this time and so I tried it. Have had little to no symptoms for almost a year! Absolutely blows my mind. Hugs to all the fellow MSers 💗💗
I have horrible cramps and spasms. Thank u for sharing because I mostly hear about numbness not the spasms and cramps
Hi Seb. I was diagnosed 3 weeks ago, and your channel was one of the first that I came across and felt very reassured that I wasn't losing my mind. For years I never knew why my body would suddenly and forcefully twitch, especially while relaxing in bed or on the couch. I find myself standing out of frustration. I'm still processing this diagnosis and learning about MS and the symptoms, as well as medication and treatment. I thank you for your video post and sharing your experiences. There is a comfort in knowing others understand what's happening. I Thank you kindly for that.
Seb, I had this going back two years ago, my whole upper body would violently jolt and shake for about a second or two numerous times a night. This was going on every night and severely disrupted my sleep to the point I would fear going to sleep because I was afraid I could have a seizure. Anyway, by the time I actually got to see my neurologist and explained what was going on she told me it was called myoclonus twitches and it was from what she explained a lesion on my c-spine. She gave me clonazepam to take before going to sleep and in the day if I needed. The medication worked, only I have had to increase the dosage because my body got used to the original starting dose. I still have them but nothing like I did before. Very frightening for me personally so I can relate to what you may be feeling. Hope this helps, stay strong 💪
adele Griffiths omg thank you so much, your comment made me feel a lot better!! All the best to you Adele ❤️
@@LifeofSebMS Adele is spot on. Myoclonus occurs across populations even with no underlying, identifiable cause. Myoclonus, often idiopathic, is considered a symptom rather than a disease. As disruptive as they can be, generally speaking, they're benign. The problem with benzos is that eventually tolerance grows and they don't work well anymore. And getting off one is pure hell. I barely slept for weeks at a time and this went on for months; on some level they change the brain. I still don't sleep long or well, and a year has passed.
Myoclonic jerks can be very unsettling, Seb, but know that they foretell nothing, and can mysteriously disappear as well.
Im so sorry you go through this. I have them badly and also a tremor in my left hand now. Bladder problems. Eye problems. I was diagnosed with fibomyalgia a few years ago. Now I believe I may have MS because of the new Tremor. My brain MRI came back normal. I'm being sent back for a cervical MRI now. No contrast. Should they be testing the thoracic as well? I feel like I cant trust these Drs. My life had been hell with all the pain. And chronic migraines for years. The tremor is not fibromyalgia. Now its clear I've been misdiagnosed.
I'm so sorry man I hope and pray they come up with something to help you and people like you with MS 🙏❤❤😕 I will pray for you at church today 😔
Sending love Seb, I am waiting for neuro appointment as doctor thinks ms. It's hard to try to understand what's happening. I keep collapsing and my right side won't do what I want. My eye goes blurry and my head gets tingly. We are here with you keep fighting xxxx
Hope you're doing better pal. I know the horror of these spasms, I have ataxia and get phases of rough head and body tremors along with severe muscle tension that I can barely walk... Best advice I can give man is a good exercise routine, clean diet, proper sleep pattern
Hang in there, I've been going through a BAD flare up since last week and it's the most painful one I've had yet. I totally understand your mental distress. 💛🙏🏻prayers for you
Hope you will get better soon! Stay strong, for sure it will pass!
Hi Seb, I'm so sorry. Wish more money could go into research to find a good cure. I'll be praying for you. Stay strong-
I sometimes have spasms in my legs and I use an electric massager on them and that helps a lot..not sure why but it usually eliminates the spasms for me. Sorry to see you go through this, as you say, it is what it is and we deal with it.
Take care and prayers for you and anyone else having a flare up.
I am so sorry to hear that and to see you suffer like this again. You are such a beautiful soul. Such a sensitive and fantastic person. It hurts me to see you in agony. My thoughts are with you! You are not alone
Hi Seb, I was just surfing through the web for the symptoms I am experiencing and landed on your YT page. I am so sorry you are going through this. I have spasms on my calves for a few years now, but have no idea what it is. I will be contacting my doctor soon. You are so inspirational. I will pray for your well being. 🙏🙏🙏
Same here... Have been with muscle spasm and pain for a couple of days, feels like an attack, but who knows... This uncertainty is the worst part. Let's hope it's nothing major for both of us. Curious about your next video, thanks for sharing!
Be strong buddy
God Bless You Seb. You CAN live with MS. Read books and You-Tube videos on everything. I have a sister who is living with MS for decades. Follow diets you find…..Magnesium is perfect for muscle spasms. Works quite well. Get them and other symptoms in check asap.
Praying for you. You are loved 🥰
Thank you so much for the tips 🥰🧡
Stay strong 💕 were ms warriors. All my support goes towards you 💕
Sorry to hear buddy. God bless you.
Hope you feel better by now Seb. Thank you for sharing. I have had pain and spasms my left arm for the last 2 weeks, I'm having MR pics in a few days. ☮️💜
Get better seb...praying for you....God bless you...
Massage with mustard oil briefly and sit in sunlight for a bit to warm up your muscles.
In subcontinent its a very effective traditional way used by people specifically wrestlers.
You will feel lightness in your body.
May Allah bless you and stay strong.
Sorry for bad English.
Seb you are an inspiration!...keep going.
Sorry man to ear that. Be strong, I hope you will get better soon. All my thought are for you.
I wish you a speedy 'recovery'! I have RR MS as well and I think we feel the same when were going through a relapse, "wait is this a relapse...??". My thoughts are with you. Unfortunately I don't have any tips for dealing with your symptoms, I too get quakes/shakes and balance issues. I walk with a cane most times. But I wanted to share my experience with marijuana. I smoke quite regularly now and sometimes, like once every few weeks or so, I can get nearly symptom free on pot. It is so weird, I can't say its certain strains but maybe (?) but yeah I can have a night where I can dance away cane free, it's really interesting. But I like that pot is an anti inflammatory and any inflammation I can deter is good in my books. I just wanted to share that weird tidbit about my MS and weed.
I'm praying for you!
I understand totally....holding you in my prayers❤.
🙏🏻🧡
So you just randomly came across my feed as I'm sitting here feeling hopeless about some of my health issues. I watched another of your videos about early before diagnoses. I have quite a few of the same symptoms for awhile now. Then seeing you spasm like in this video was like looking in a mirror. I don't spasm as severe but I spasm for no reason. I'm thinking I need to talk to my doctors about this as a possibility. It would explain a lot. I subscribed because I would love to get as much information as I can. Thank you for being so brave and strong getting this information out there. I've been trying to find out what's going on with me since 2019 but when they found my kidney disease/birth defect they hyper focused on that and the other symptoms were brushed under the rug and forgotten about. Thank you again!
Thank you so much for your kind words! I definitely would recommend talking to a doctor seriously about your suspicions 🙏🏻🧡
Thank you for sharing. Stay strong, Seb!!
I'm praying for you!
Stay strong, bro!
The twitches I have also come alive when I'm in bed. A couple things that helped me: L-Theanine, Magnesium, in addition to CBD oil. You're amazing! A warrior! I also do yoga and that helps get my mind calmed. Yoga with Adrienne.
My thoughts and prayers are with you.
Wish you all the best and lots of strengh in your journey. I don't have MS, but have been on long term medication for other chronicle condition I have. :)
I understand what you're going through, my husband and I have been sleeping in separate rooms now. Hope you get results soon
I have just come across your video. I know it was three years ago. I do hope that you are well and things have got better for you. I send you so many well wishes. I could see the pain in your eyes and I really felt for you. 💕
Hi Karen, thank you so much! The spasms are gone now 😌🧡
Hey Seb, I am also in a really bad periode right now. I just did a bunch of research around OMS and I think this might really help me a lot. I am gonna start to live the OMS way very soon after a little more research and soon I'll share a video on my vlog to see if this can make a difference. We'll see. I know how scary it is when your body is doing weird stuff, so I always go looking for ways to counter it.
Cheers,
Al
love you man
My heart goes out to you. Love ❤️
Hey Seb!
I'm really sorry to hear about your flare, let's hope it's only temporary.
THC and CBD are supposed to help spasms. Unfortunately, I don't have the chance to take thc, since it's illegal here, but I've read an article about melatonin, the stuff people usually take for jetlag, and tried it. I'm not sure if it helps either, but at least I sleep better and having a goodnight's sleep is always welcome.
Be brave, and look only ahead! :)
Where about is it illegal?
Sending my love x
Ah dude stay strong xxx
used to have intense spasms like my whole body would jolt, usually at night but slowly it went away, these days only one body part like a lower leg (no higher than knee) or an arm (like a palm) jolt and its really mild, in a month will go do MRI so i wonder what i will see there but im hoping for no activity
i clearly see how hard it is for you emotionally, wishing you only good things with your health!
I have this regularly. 🙏🙏 know that you are not alone.
U will be better seb.. God bless you😢😢😢
🙏🏻🧡
Hi, I have the same symptoms and have had them for almost 2 weeks now. I know it's a flare up and hope Gylenia will help with this (I started last week after 13 years of Avonex). If Gylenia won't work soon, it will be necessary to have corticoids. You should talk about this with your neurologist
I want to give you a hug x
Love you brother
Hola Sebastian. Soy nuevo en tu canal. Que pena escucharte cuando estar estresado por tus sintomas. Yo tengo mi vatalla personal con mi salud y tengo mis momentos de desesperacion y depresion. Aunque sea differente la batalla, los sentimientos son iguales. Hechale ganas chulo. Que no te agarren las garras de la tristesa. Un dia a la vez y sonrie que bella es tu sonrisa.
Muchas gracias por tu mensaje! Te mando un abrazo.
Please start taking or eat nutritional yeast, or a natural B1. I have MS and before I found out I watched National Geographic zombie alligators you can find it on RUclips I didn't know what was wrong with me but I could relate to those alligators I mean they were supposed to be fine in water but they were drowning in water. I believe something is killing off our gut bacteria and making it where we do not get enough B1 or really any of the B vitamins. I was on a very high carb diet which I shouldn't have been I know that now. I've watched dr. Berg talk about B1 and how it different things deplete it. B1 is a thiamine deficiency, called beriberi and processed foods and refined grains, but other things can also deplete b1. I was diagnosed in October 2016 I have been doing the coimbra protocol since 2017 and also supplementing with b vitamins and nutritional yeast I haven't had any problems since then. Please at least use the nutritional yeast you can sprinkle it on your salad or different things and look in the Kombucha tea it can help heal the gut. I am also doing the keto diet now and I am improving a lot took them 20 years to find out what was wrong with me so I ran down a little bit but now I'm on the upswing and hopefully will continue really taking my health seriously now I hope you do well I hate to hear that you are having problems please look into one alright you don't have nothing to lose to try. And since Ms is a neurological disease that strips the myelin sheath off of the nerves. B1 and B12 both help regenerate myelin sheath there is something to it do your research on them at least it can't hurt to try. Take care
You're going to be ok.
Hey man! I am 26 in 2 weeks, diagnosed almost 2 years ago, i am on copaxone and 10000ui d3 daily, i had around 3 attacks before starting the dmds. My last flairup was about muscle twitching everywhere, like a jumping eyelid, then both, then my legs then arms neck etc.... practically everywhere even my ass. I took baclofen which worked a bit but then as i stopped thinking about them in around 1 year they went away. I still have them even now january 2020 more when i am stressed but they tend to go away for days when i am relaxed.
@Andrei Felos how often do you take Baclofen and are you still taking them. Do you feel drowsy and does it make you gain weight by any chance?
(sorry for my horrible English)
Be strong. Remember that anxiety is your worst enemy and, unlike illness, you have the power to control it. I know what it's like to fear for the future, but looking to much at your sympthoms is an open door to depression and isolation. "This too shall pass" remember this old sentence when you feel despair. Never let you fall into this loop of sorrow, never.
I Don't know what is your Treatment, and i'm not a doctor by any means, but did you look at the Coimbra protocol and the effect of high doses of vitamin D for MS patients ? Their is more and more proof that Vit D have great effect on MS, and a lot of research led by serious universites. Maybe you have already check by yourself, but if it's not the case, you should maybe take a look at the facebook page of the protocol. I wish you the best.
From France, with love.
Hang in there Seb
🧡💪🏻
Keep praying..🙏
Could this be a side effect of the Medicine ?? You were doing pretty good. I did notice that you had a brief moment of "stutter" in your speech. Keep a journal of when it started and what the main symptoms are. You hang in there, try to stay Relaxed through music and meditation. Know that many of "US" are going through the "unknown" Just go day by day, and focus on something that will lift your spirits and show your Beautiful Smile. Love & Peace ~ DD
Oh yeah! I stumble on my words often and I can't control it, I also forget what I just did. My short term memory is shot. What?
hi just wonder if you have looked into diff vitamins to support you ie b vits and magnesium can help with myelin sheath etc,, Im no dr but spend a lot of tme looking into things as I have cfs possibly caused by ebv, medical medium eric berg are helpful with nutrition and symptoms,
I get spasms when my muscles are not relaxed. I sometimes get it at night when I’m trying to sleep.
Maybe try a bit more stretching. I do 5x calf stretches and hold for 20 seconds on each leg. It does wonders for me.
Good luck and hope you feel better soon
Your a true warrior My Lupus SLE and Fibromyalgia is going to to flare. magnesium is the best Optima-Relax magnesium is the best
My muscles jump but yea only when I’m relaxed.. if I’m up and doing things I don’t think it happens at all. It’s really bad at night trying to fall asleep.. i don’t know why this is happening
Hey bro pls tell me do you face everyday these spasms ? And where you get the twitches pls tell me bro plss
I lke Seb, beautiful boy♥️♥️♥️♥️♥️♥️
Seb , i totally agree with Leaf Green this foretells nothing , so dont worry , i mentioned this to my dr and he put me on statins this was for my legs jumping and twitching during the night and keeping me awake , i was going out of my mind from lack of sleep , anyway the meds made me worse my arm started to jolt which never happened before , so i binned the meds . i went to see a healer he centered and grounded me that helped also i started to take BLACK SEED OIL . after a week or so i was sleeping like a baby , im not a big fan meds , hope this helps , oh by the way i am a member of a fb group for gay men with ms , would be great if you would like to join , take care stay cool , Nick
Oh my god! I feel so sad for you, not just because you are extremelly handsome, but also cause you are so young ...
😞🧡
I've had muscle spasms but they were helped for the mist part by starting Ocrevus treatments but this week I was caught in minus degree weather and had very bad spasms in my left leg which shocked me cause the right leg is my drop foot leg. I could not move until it stopped and my arms froze ESP my left arm which had first bite liked pain and it took forever to warm it up. Part of ms I discovered. Shit
I think my mom has MS. She jolts and has spasm attacks. Her eyes blink its hard for her to eat or drink when it happens. The hospital doesnt want to help her.
Are you able to work when you have a flare? 😥
Things are a bit sh.. right now here as well the changing of the seasons and sudden temperature shifts is not my or My body’s favourite ! even if I’m for me on some pretty good medication right now. Things that help specifically for me are long and short term zma in the evening ie magnesiumcitrate,zink and B6 so that I get at least 500 or 600 mg magnesium citrate ,a heating balm and if its really blah hydroxycine 25 mg ( anti-musclespasm, takes care of weird ichy feel, anti- histamine I Don’t get tired using it others use it as a sleeping pill but I’ve got adhd so I just go more zen, non- habituating drawback if used longterm weightgain) also an aminoacid combo helps sleep a bit ( to be honest does a lot more normally, but it still helps) and finally a hot water bottle but right now is not the funnest to be honest. Tooth ache in the entire body mixed with spasms and antsy feeling... who came up with that combo, really not OK!
Oh gosh I had a terrible spasm at it felt like it was my brain but it was the muscle in the neck awful. I know how you feel tho
Hi Seb! Apologies for the bluntness of this question but have you suffered some kind of childhood trauma or ptsd as a child?
Hey, no, can’t think of any! Do you think it may be related to ms? 🙏🏻🧡
Responding privately through Instagram.
Do vitamins b, d and k 2
Dealing with that right now it's a sign I'm going to flair up grrr. At least I'm not whole body vibrating yet that is very very tiring on the body.
Stay strong! 💪🏻
I always got told to use magnesium for cramps - has anyone found that to be effective for a flare?
I wish I could hug you.
My wife gets those Leg twitches when she is trying to get to sleep at night, 2 to 4 times a month. She takes a cap full of PM cough syrup and that allows her to get to sleep.
If that helps soothe the spasms then go for it! 🙏🏻🧡
How long do the spasms last for?
It really depends! Mine come in bouts of a couple of hours 🙏🏻🧡
@LifeofSebMS Thanks for replying. I'm going to see a neurologist soon. See if it is Ms I've got
Best of luck 🙏🏻🧡
(I hope it’s not a relapse)💔💔💔
I'm so sorry..For the same reason I've been receiving Miorel and Botox injections.
I’ve received that too and it does help 🙏🏻🧡
I hope you re not given any kind of benzodiazepins for a longer period as the tend to fast hit tolerance and give these MS like situation Exaktly in same behaviour. I really hope if so, the dr dont higher the dose rather taper it slooooooow as they mess up the receptors even worse in very rapid speed. I sooo wish you out of the "attack" and just came to think of tjis as you your self dont really recognize this Attacksituation❤️🙏🏼🌹⭐️🌹🙏🏼❤️
I've heard ayahuasca might help.
How so?
High doses of Vitamine D3 for many weeks is one of the best remedies to treat an AI decease like MS check your Vitamine D3 level in your blood most people with MS have low or very low levels under 20 🙈good luck and stay strong / Vitamine D3 is extremely important for your immune system / Rick
I use Baclofen for the spasms. Get a script from your neuro!
I did and it doesn’t work for me 😕🧡
☹️
Have you ever experienced the twitching all over the body?
The relapse was in my legs, but I do sometimes experiences neck and finger twitches 🙏🏻🧡
I am so sorry. May GOD be with you all times!!!! Sometimes High Dose of Vitamin b12 help a bit. Check your level. Doctor Say till 700 is normal but its Not...some take supplement and High Dosis to get Level of 2000 !!! Check this out!!!! Also Magnesium High Dose!!! Check your Level!!!hugs from Germany !!!! Just a suggestion!!!!! WHO knows!!!
Try to get close to god. Start praying the rosary. That will help you spiritually. Try it.
This must feel
So tormenting:(
I hope u r well now
I am thankfully 🙏🏻🧡