Viewer's Question | How did my MS tremors begin?

Tremors are currently possibly the worst symptom that I have to deal with. Responding to a question from a viewer on how they began, I tell you the story of how they have evolved through time and what treatments I take to be able to live with them.
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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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[@RuthAnnnMorris]

I take Gabapentin, Baclofen and Tecfedria along with a few others but the Tecfedria is for MS. Baclofen controls my tremors and jerks. Anyway, I’m going to be 70 in November and I was on all the shots with blasts of steroids since 2006. Stay strong my friend!

[@LifeofSebMS]

What a cocktail! I hope it has helped 🙏🏻🧡

[@sofiabanuelos4953]

I take gabapentin sentralin and more on the list hope you’re better

[@Reallychris_]

I couldn’t control my legs and had drop foot. So I stepped wrong today and tore a ligament in my foot/ankle. Ended up at urgent care. Now I’m on crutches and have a boot.

[@LifeofSebMS]

Oh wow, that’s terrible 😔 hope you recover soon 🙏🏻🧡

[@SpencersMSStory]

You've had some rough times buddy. I'm sorry to hear but always rooting for you! hang in

[@LifeofSebMS]

Thank you Spencer! Hope you’re well buddy? 🙏🏻🧡

[@metaspencer]

@@LifeofSebMS Yep, doing great. Thanks!

[@emilioreyes7849]

You are a great encouragement to all of us.

[@LifeofSebMS]

Thank you brother 🙏🏻 we are here to encourage each other through this 🧡

[@nicollehearne5258]

Thank you so much for talking about MS. I was diagnosed about one year ago. Your videos are so helpful and keep me from feeling alone on this crazy journey. Please keep it up, I appreciate everything you’re doing💕

[@LifeofSebMS]

My pleasure, Nicolle 😘🧡 we should not be alone in this, especially not now that social media can help us stay connected!

[@user-bf9nh5fw6f]

Great to see that I am not the only one with debilitating tremors. Can’t write, eat or drink. It’s a real nightmare and the worst MS symptom for me. Shattered cerebellum. Currently assessed for brain surgery (DBS).

[@LifeofSebMS]

Wow! Let us know how it goes 🙏🏻🧡

[@hkeeler8813]

With you there. My boyfriend so severe with tremors. I have to feed him. Worst thing is him having to wipe his mouth or nose. Just gotta do what you can. Videos like these help share ideas to cope and not feel alone. Drs don't have all the answers. Some don't realise how darn difficult daily life is. All the best to you. ♥️

[@LifeofSebMS]

😞🧡

[@ctjmaughs]

​@@hkeeler8813Shattered cerebellum? How does that look on an MRI? STAY strong and positive.

[@hkeeler8813]

@@ctjmaughs early symptoms were tremors. Welding became difficult. Drs thought it could be deterioration of the frontal lobe due to previous head injury many years before. We had our doubts. This was ruled out and 7 years later after tests MS diagnosed. I do believe his accumulation of alcohol, smoking and very poor diet has caused deteriorating myelin over the years. Progression of it is slow. There is only so much he's willing to change in lifestyle. Reluctance to exercise is also a challenge. So I/we can only help we're we can.

[@aaronmartinez4711]

Appreciate you Seb I was diagnosed on October 6 2023 Being following you since I was from the Hospital and rehab on November 2nd been fighting the symptoms and stretching and doing all my therapy exercises at home Today finally saw my first MS Specialist and Friday is my follow up . My Journey continues and you have been a guiding light and true inspiration. Much love and light. This to shall pass. 🙏🏼🙌👍🏻

[@LifeofSebMS]

I wish you all the best Aaron! 💪🏻🧡

[@andredemers69]

Hi Seb! I'm a 62 yo woman that as been diagnosed with fibromyalgia in 2015 and rhumatoid arthritis last December. From 2018 I noticed that I had a subtle tremor not noticeable when I had it but when it stopped for 1 second I noticed that it was there and came back in the next second. Since February of this year I started to feel internal tremor in my left hand and still very subtle. I saw my GP and prescribed testing for magnesium and vit B12 in my blood. It came back normal. Saw him again 2 months later, I waited to see him because I wanted to make sure that it was something that was not going away since it was on and off all that time. I explained to him how the tremor was getting more frequent, all over my body and more intense. He scheduled me for a EMG. The appointment will be in September so I went back again to see him because the tremor was getting even more intense and I could feel it in my chest, abdomen and even my head (I can hear the tremor if I lie my head on my pillow on the side so that my ear is catching the vibration inside). I told him that occasionally I had external tremor as well. He referred me to a neurologist but it could take many months before I get to see one. He also prescribed gabapentin which seemed to be efficient after a week but then the tremor came back the next week. I suspected Parkinson Disease but I find that my symptoms are more on the MS side; brain farts, problems with coordination having me make stupid moves, painful eyes if I roll them, sometimes external tremor, problems with balance, fatigue, tinnitus, burning sensation in my hands, etc. So, I'm worried it could be MS but my doctor has absolutely no clue of what I have, What if I have to wait a whole year before I get a diagnosis, my condition could deteriorate during that time...I'm really worried! Thank you for reading my message. ;-) Thank you for your videos.

[@LifeofSebMS]

Hey Andre, try not to worry too much about it in the time leading up to the appointment… easier said than done, but engage in some light activities such as yoga or walks in the park to clear your head. Worrying makes it worse! 🙏🏻🧡

[@grwwngs2880]

My tremors are insanely horrible and I wear contacts... boy that's fun... I stab myself in the eyes constantly. I've almost cut myself while chopping veggies. No real cure for this symptom! Mine are through my entire body.... it's so debilitating just like you said Seb!

[@LifeofSebMS]

It’s horrible 😞🧡

[@candacelebedoff]

Thank you for talking about MS, just diagnosed Feb/23

[@LifeofSebMS]

Be strong!! 💪🏻🧡

[@Scrubbini]

I am happy that you are holding on. We are all in the same boat. Thanks for sharing your experiences.

[@LifeofSebMS]

Thank you brother 🙏🏻🧡 it helps so much not being in this boat alone!

[@MatttMan]

keep smilin, love ya buddy!

[@LifeofSebMS]

Thank you Matt ☺️ I will, I promise 🙌🏻🧡

[@MatttMan]

its all we can do, and as easy as it sounds, so difficult to do…but, it helps others…peace Bro! you got this ❤️

[@user-eb4qt5cx1o]

hey seb... way back in 2020 when I was first diagnosed, I was so heavy with veggies... i notice there I don't have tremors.. but lots of veggies are hard to keep but... now I can feel tremors, especially at night and when stressed...

[@LifeofSebMS]

Hey, try to incorporate veggies back in your diet 🙏🏻🧡

[@houssamally]

Hello Seb, what about talking about “brain fog”? Manifestations and tips to deal with it? Thank you in advance

[@LifeofSebMS]

Will do! 🙏🏻🧡

[@Cwright2s1187]

Thank you for your video. I have not been dealing with tremors, but instead have been dealing with fasciculations all over body intermittently for about 7 months now. I’ve never had a health issues, but I used to drink a quite a bit more than I should have while trying to offset with diet and exercise (we all know better). The fasciculations come and go…I wouldn’t describe them as spasms and they can come for days or weeks and then go for a week or two…if you weren’t me, you wouldn’t know I was having them…you can see them randomly in my hands, calves, thighs, back, occasionally face, ect….i stopped drinking alcohol immediately thinking maybe my electrolytes were off, but didn’t help. I was a heavy coffee drinker, I switched to 1/2 caffeine and limit my intake more days than not(but overall caffeine I take is minuscule compared to before), but no change. Tried to reduce stress (bc without alcohol I have had to leave to cope in healthy ways), but no change. I focus on more sleep and quality sleep, but no change….exercise may seem to decrease them overall, but not 100% sure. Not drinking any alcohol has caused me to eat more late night snacks, but I’m getting much. Better control of that (thinking that maybe sugar was the culprit), no change….i cut out diet sodas, thinking maybe it’s the artificial sweeteners, maybe a little improvements maybe not (in the middle I tried caffeine free diet soda, but no help, so cut diet soda out completely)….i don’t know…it’s not bad enough that it affects my life anymore than the mental stress of it, which I can handle with some self behavioral therapy. I thought maybe I had adrenal fatigue, followed those guidelines, no change… So, i feel healthier than I’ve felt in Years with all the chnages to my lifestyle, but they just seem to go away and come back, and I can’t correlate them to anything I’m doing… I have no clue…I have a few ideas, but I refuse to go to the doctor. I’m 36, the picture of health from the outside, I have two little kids and an amazing wife that are my world, I am successful in my profession and it worries me. My wife is a nurse practitioner, but I refuse to have labs or MRI. I know I’m dumb for this, but I can’t help it. We will see I guess. I want to raise my kids more than anything in this life, but if this takes me, then so be it. Shit happens and then we die. Good luck to all of you that have weird neurological symptoms and are worried, I feel you.

[@grettavandetta7693]

I haven't watched your videos until today, I'm so happy to have watched this one. I stumbled across it because I was googling some medications I'm on ads was worried about taking a mixture of different medicines. Today was a bad day and I couldn't control tremors and my heart rate was at a resting rate of 120bpm, when I would get up I could do some things and have to lay down again. at one point I spent a few minutes attempting to pick up some paper and I couldn't make my daughters lunch for the shaking. I have just started on Propranolo a week ago, Its nice to hear it has a good review from you. I like how you tell your story.

[@LifeofSebMS]

So glad this video helped you!! 🙏🏻🧡

[@Shanti565]

Hi Seb. I am so glad to see you again you are such a sweet man.

[@LifeofSebMS]

☺️🧡

[@robotbutterflies]

I take a ton of gabapentin. So far it usually pretty effective. I don't know if this would only apply to those dealing with healthcare in America, but I wonder how others cope with the time, stress, and frustration of constantly having to fight for your medications and treatments to be covered. I've had several occasions where I've had to delay my infusion because someone somewhere is dragging their feet, or flat out denying coverage.

[@LifeofSebMS]

It really must be so frustrating 😞🧡

[@Andy80ization]

Thank you for your videos.

[@LifeofSebMS]

🙏🏻🧡

[@EvenSoItIsWell]

Thanks for sharing Seb! So glad you are working with a therapist and adaptive tools to help with your tremors.

[@LifeofSebMS]

I recommend meeting with a therapist to everyone! 🙏🏻🧡

[@tjworker5482]

Also! You are definitely a good man.🙏🏾🙏🏻

[@LifeofSebMS]

🤗🧡

[@jena2664]

Thank you for the video. It is hard for me. You be strong.

[@LifeofSebMS]

🙏🏻🧡

[@marieb9081]

Very helpful tips…thanks Seb!

[@LifeofSebMS]

🙏🏻🧡

[@marisazanella4235]

Thank you very much for your sincerity and explaining in a simple way facts which must be very hard for you to cope with. I admire your courage and your positiveness! 💪👍🍀

[@LifeofSebMS]

Thank you so much for your support 🤗🧡

[@fayingegneri1962]

Thank you so much for this video I’m going thru same thing now

[@LifeofSebMS]

🙏🏻🧡

[@tjworker5482]

I’m 54 years old I’ve had mild tremors to bad tremors to today. My head started getting bad. I’m bad at the gate sometimes. Anxiety played a roll. I’m hoping ms may not be playing a roll. No diagnosis of such. My tremors are pretty bad at times. Embarrassing as well 🤷🏿‍♂️🤷🏼‍♂️

[@LifeofSebMS]

Stay strong 💪🏻🧡

[@henrykoenig9203]

Do you ever get the sensation of ants or bugs crawling? I used to but very glad this has gone for now, but I am always worried what is round the corner. I can be having the best most care-free day and my partner reminds me to take my meds and I start thinking about the next 10 years and what I will lose or feel or not be able to do.

[@LifeofSebMS]

Oh yes, those ants can pop up from nowhere all of a sudden! Yeah, the future is a tough thought for us… have you seen this? kzbin.info/www/bejne/l6CshZ9mi8R9Zq8 🙏🏻🧡

[@RodSwift]

Yes

[@07broly]

I have uncontrollable tremors in my right (dominant) hand and I have to use my phone to communicate, specially since MS seems to have atrophied the muscles that allow me to speak unfortunately. It's made me bedbound and wheelchair bound unfortunately and I'm only 29 and was diagnosed 2 months before I turned 27, which I was mostly fine and working at the time

[@LifeofSebMS]

Oh dear 😞 I’m so sorry to hear brother… I wish I could give you a hug… you are in my thoughts 🙏🏻🧡

[@07broly]

@@LifeofSebMS thank you 😊 I realized in 2021 that i I've probably had MS since 2017 thinking about it in retrospect

[@LifeofSebMS]

When was it diagnosed?

[@07broly]

@@LifeofSebMS 05/15/2020

[@LifeofSebMS]

Wow that’s very recent…

[@RodSwift]

Seb: I don't have tremors much, except when my legs are in certain positions. I do have spasms though, which are very concerning. But thank you for sharing your experience of your manifestation of this disease. Stay strong, warrior. Your fans, and fellow people, adore you!

[@LifeofSebMS]

Thank you for following my journey trying to make sense of this condition 🥰 try Baclofen for the spasms- it has worked for me! 🙏🏻🧡

[@veeraindrasenareddy-qc7jd]

hey @RodSwift i am getting tremors at a certain position in my leg.... is it ms or did u got ms??

[@RodSwift]

@@veeraindrasenareddy-qc7jd I have MS, which can lead to all sorts of electrical signal issues between the brain, and muscles, etc. All sorts of things can cause tremoring, spasming, and other experiences - it is best to talk with your health professionals and care team.

[@RodSwift]

@@veeraindrasenareddy-qc7jd for example, if I have one exact positioning in one leg, I get a leg bouncing ;)

[@veeraindrasenareddy-qc7jd]

thanks for replying... I have shown my leg tremors to my doc he said it's nothing and how did u test for your ms...? 5 days ago I seen a video regarding ms and i read symtoms ( I am a health anxiety freak) and i started experiencing them.... Idk what a tingling sensation means all i am experiencing right know is that my nerves sometimes beat like heart beat and itchy sensation all my body..... are these related to ms? and how can i test for ms?

[@14sgs]

I wasn't sure I should comment but here goes..... First of all, Thank you for sharing. You didn't mention dosage of Gabapentin. I started low dose (300mg x2 per day) No side-affects, but it only helped a little. When I went up to 900mg (2x per day) things got much much better. I also use CBD cream on hands & feet (this is new) and that helps A LOT as well with the tingles and trembles (I won't smoke anything). If miss my dosage window I can really feel that I missed it. Best of luck to you. The CBD cream was just accidental. I tried it and I think it helps. Good comments section here as well. We are all different and that is the hard part. I only have YT for research

[@LifeofSebMS]

Ooh thanks for the tip friend! That CBD cream on hands is an interesting one. As for gabapentin, I’m not sure what the dosage was, but I wouldn’t want to go up anyway as it made me very anxious… take care and I hope you keep finding the comments here of interest 🙏🏻🧡

[@tracyconway3758]

Try lifestyle changes. Check into Drs. who have treated their MS with lifestyle changes, etc.

[@LifeofSebMS]

🙏🏻🧡

[@RobdeKlerk-qg6lc]

Don't believe their BS

[@Kashif5478]

Make a video on your muscle twitching?

[@LifeofSebMS]

That would be great, but my muscle twitching only comes at random times… it’s the remnant of a relapse I had in 2019 on which I made this video: kzbin.info/www/bejne/mGHPlqmfiMypp9E

[@lindseymcmullen-vickers4257]

Hi Seb, I was diagnosed in 2010 and have slowly got worse , the tremors started probably 6 years ago but the worst part for me is on waking both my arms shake for about a minute. I was wondering what your thoughts are on this. X from the uk

[@LifeofSebMS]

Hey Lindsey, thanks for sharing. I wish I had any constructive thoughts on this, but I’m afraid I suffer from the same… the only comfort I can give is that you’re not alone! ☺️🧡

[@lindseymcmullen-vickers4257]

@@LifeofSebMS Thankyou for your reply . You do sometimes feel very much alone. Rest assured I’m holding your hand too. Much love . X

[@niceguy4u1000]

I am so sorry that you're going through this. I have small fiber neuropathy and have a lot of the same symptoms that you're experiencing. My neurologist has me on gabapentin, propranolol, and leviltracetum. They help with some of the pain, but the tremors are still present and so are the body jerks. Do you ever experience loss of control of your arms, legs and ever get the sensation of your skin being on fire?

[@LifeofSebMS]

Yes! I am currently dealing with that sensation of my right arm being burnt, but do you think it’s a side effect of the meds? I feel that it’s an MS symptom… 🙏🏻🧡

[@niceguy4u1000]

@@LifeofSebMS I feel that it is a symptom of MS.

[@lillyrocks82]

I have tremor in my head and sometimes in hands. I feel too like a tingling. And like if my brain something inside is moving or doesn't enough place. And then I feel very weak, in my arms and hands, and I feel tingling in my face, legs, .... I feel I can't think well. Like if my brain were swollen/inflammation. I have too pain inside my neck with lymph nodes enlarged but not so enlarged to be taken seriously. 😞 Mt face is swollen too. I don't know if what I have is connected. I find difficult to explain this with doctors as immediately think like "that's too much" or take me as an alien...😢 Al I'm glad I found your videos. ❤ Hope someday can be created a medicine to stop the progression and a cure for autoimmune conditions. 🙏🏼 Warm regards :-)

[@LifeofSebMS]

I hope so too! 🙏🏻🧡

[@ms.p.823]

Does anyone suffer from how I describe it, buzzing , dumbness on hips and shoulders, associated with nerve pain, weakness in all limbs

[@saraNeon11]

I’ve yet to be formally diagnosed but I also get a buzzing numbness. Mine centers on my right hip and thigh, my shoulders and upper arms, and then it also occurs starting from the middle of my back near my spine to the left side of my back right beneath my shoulder blade. It’s often followed by the ms hug once the buzzing numbness dissipates

[@LifeofSebMS]

I do too. The feeling that there’s wool rubbing on my skin when I’m wearing clothes. It’s a very normal symptom and can occur anywhere in the body…

[@ctjmaughs]

How is your blood pressure? My tremors flare up when under stress. Good Luck. Hope those remylination treatments work wgen they come out or approved by the FDA here in the US. My tremors are ok for now when pressure is under control ( under 140/95 for me)

[@hkeeler8813]

I haven't heard of the remylination treatments. That would be great for many. Yes any stress/ anxiety makes tremors worse. Stop, relax, deep calming breaths and try again later. All the best.

[@michaellourenco8927]

Just one thing to say: ❤

[@LifeofSebMS]

🤗🧡

[@michaellourenco8927]

@@LifeofSebMS 🫠🤗❤️❤️

[@kristian4805]

I have some distant recollection that you are in Spain? moved there?, maybe I am wrong. But I if correct, I am curious if you feel better in this climate and all.

[@LifeofSebMS]

Hi! Yes, you remember right. I definitely feel better in this, particularly because I don’t get sick so often. But then the heat is also tricky, so it’s not all good… 🤷🏼🧡

[@dermlover1]

Hi Seb :) How many lesions (brain and/or spine) did you have when first diagnosed?

[@LifeofSebMS]

Hey there, I had 25-ish, now they have more than doubled… 🙏🏻🧡

[@lady_SL]

Has anyone been diagnosed with functional Neurological disorder and then MS? I started experiencing tremors during PT and had a full body tremor but had only been dianfosed with post concussive syndrome two months later I had an episode with slurred speech and got daily full body tremotsy, saw Neuro and diagnosed with psychogenic movement disorder then functional Neurological Disorder. And then 5 months later my MS diagnosis was confirmed. I have extreme fatigued daily and still trying to figure out how to manage it.

[@LifeofSebMS]

Sorry to hear 😞🧡

[@whattowatchrightnow]

I have these. a lot.

[@LifeofSebMS]

😞🧡

[@MSShuffle]

What are some adaptive measures you have put into place for yourself when it comes to taking care of yourself? as in self-care or even cleaning around your home?

[@LifeofSebMS]

Good question… I have no-tie shoelaces, armrests attached to the table, a stool in the shower in case I want to sit, canes in various places… you? 🙏🏻🧡

[@annettematisz46]

Nothing like receiving the commentary and opinions about your symptoms from friends huh? Gaba has some nasty side effects from what I recall :). Best wishes Seb!!! ❤️‍🔥

[@LifeofSebMS]

Yup, that’s the reason why I left gaba… best wishes to you too! 🙏🏻🧡

[@jj-py9kf]

What are the nasty side effects? I've been on gabapentin for almost a year now. I wonder if some of my problems are actually side effects from gabapentin.

[@LifeofSebMS]

I woke up in the middle night with an odd feeling of impending doom… it started with gabapentin and stopped when I quit gabapentin 🤷🏼🧡

[@TitLeeEst]

Yeah, I've been on it for epilepsy. Depression, brain fog, insomnia, cognitive impairment. It made my life hell.

[@Malakaiea]

Did you ever feel like you had internal tremors? Like you were internally vibrating almost. I suddenly have this, and sometimes my hand shakes when I usually could hold still.

[@margaretfahey8090]

I am not a medical professional but I have heard repeatedly that the human brain prefers fat (ketones) as its main fuel rather than glucose. If you eat only carnivore food such as meat, fish, poultry, eggs, and dairy and omit all plant food from your diet your brain will benefit so much that you will cure yourself of most illnesses, especially illnesses of the brain such as dementia, parkinsons disease, m.s., autism, epilepsy and many more. If the brain needs glucose it makes it itself in a process called gluconeogenesis so you don't need to ever eat sugar or plants again. I have come across many carnivores online such as Professor Bart Kay, Dr Anthony Chaffee and Dr Ken Berry.

[@LifeofSebMS]

Interesting 🙏🏻🧡

[@erny7823]

Hi Seb - I was wondering if you or your subscribers have problems with swallowing. I am currently on beta-blockers for numerous issues (tremors for sure). However, the swallowing issues I am having has led for me to have a G-tube inserted into my stomach to put proper nutrition without the threat of choking. Any thoughts?

[@LifeofSebMS]

Hi Erny, yes, I had it before being diagnosed. I started eating fine, but after three mouthfuls I had to stop because I felt like I wasn’t going to be able to swallow (had to spit out my food). I lost a lot of weight because of this. Now the severity had diminished, but when I’m tired I may swallow improperly (ie sending it out the wrong pipe, choking slightly). Is this a relapse or something that you’ve had for a longer time?

[@erny7823]

@@LifeofSebMS It was a difficulty for a brief while and then I unfortunately had head and neck cancer (cured) and it became almost impossible to swallow without choking after that treatment. So, they have put in a G-tube that puts liquid supplement food through me as I sleep. I can swallow tiny sips of fluid during the day. I found that there is a significat group of people with MS who have this happening. I DO understand that it can be temporary and I am hoping this will be my case. Thank you for your response. I think of you and your situation so very often.

[@LifeofSebMS]

🙏🏻🧡

[@hedgehogwildlifejunction9119]

THIS IS TOO WEIRD. i was going to ask you if you had tremors. Although i have had MS 20 years, not really tremors. (PPMS). Lately especially in the morning my hands feel shaky and i cant hold onto things properly although they dont necessarily look like they are moving its kind of more internally. I get it throughout my body too. sometimes i have had it in my legs and its noticeable. it was really hard lately as i had to give my dog medication and hide it in a little bit of meant i couldnt do it, i had to get someone to come in to do it for me. i dont take anything i was on beta blocker though until last year was on it actually for 15 years for my BP, after my heart attack they stopped it and i am on bisoprol now. hummm could there be a link with stopping the proprananol and onset of tremors does anyway else with PPMS have tremors?

[@LifeofSebMS]

Hey, I don’t have PPMS and I have tremors too, and my understanding is that they are caused by lesions in the cerebellum… my neurologist told me that it’s a very tricky symptom to treat, but that some people may find relief with beta blockers. I started taking them, but the relief was too small considering the potential side effects, so I stopped. Is your new medication helping you? 🙏🏻🧡

[@hedgehogwildlifejunction9119]

@@LifeofSebMS no idea i never bother the neuro with it, as i just think its more stuff to deal with. havent had a brain MRI for years they just do the spine where my lesions are and i have ongoing optical neuritis. this is werid though like my hands should be shaking but not visible i cant hold onto things like i said just drop stuff all the time lol. was in hospital last march with heart attack and they did do another MRI spine then and said i was active. nothing they can do for my MS so i just deal with it. in the uk seeing a doctor at the moment hell it would be quicker to visit the moon lol. I am happy though. I enjoy reading others journey and seeing people positive. it is what it is. x

[@hkeeler8813]

My boyfriend has ppms. After trying many drugs and doses he has been on primidone for many years. I don't think they have much effect now and wouldn't know unless we try anything else. Very much hit and miss with treatments for people. Keep strong.

[@YouWoszczu]

How do you deal with keyboard?

[@LifeofSebMS]

I have extensions on my desk to rest my arms on. They help a lot!

[@stevengagne7015]

How did you get diagnosed bc I’ve had mri and cat scan on my brain

[@LifeofSebMS]

Mri and spinal tap 🙏🏻🧡

[@stevengagne7015]

@@LifeofSebMS see I went to my dr and talked about a spinal tap and she told me to see a therapist bc I know I do have a lot of anxiety but does it hurt?

[@RobdeKlerk-qg6lc]

Who cares , if you need it​@stevengagne7015

[@davidhopwood3590]

❤️❤️

[@LifeofSebMS]

🙏🏻🧡

[@remykisjes821]

Does alcohol helps your tremors?

[@LifeofSebMS]

It does, but the day after they feel worse… 🙏🏻🧡

[@remykisjes821]

@@LifeofSebMS Same with me i have ET

[@britsluver]

Velcro instead of buttons xx

[@britsluver]

For your shirts lovely

[@LifeofSebMS]

Yaaas 🙏🏻🧡

[@britsluver]

@@LifeofSebMS slayyyy 🧶

[@Dr.ashraf-Dr.namazian]

👏🏻👏🏻👏🏻👌🏻💪🏻

[@LifeofSebMS]

🙏🏻🧡

[@FaydraGirl]

Thank you for talking about tremors! Idk why no one even touches on tremors when discussing ms. So this is a relief in ways. I do take gabapentin and a beta blocker. I have to take a mountain of gabapntin a day. Max dose. I was rx it a million years ago when I was having involuntary movement issues. Plus some nerve problems. Its alway seemed to help but its completely irrelevant here other than the coincidence. I have had on and of tremors for years. Also unexplainable clumsiness and falling my whole life. Then the last 10 years I noticed that I just start tipping over as I was walking requiring constant corrective movements. But I rationalized that it was just part of my meds related to mental health. Then I snapped my ankle. And... something just happened. Maybe the trauma flipped some sort of switch, idk. But I was also under extreme emotional durress at the time too. I cannot pinpoint a day or time or anything really. Just that at night especially I had to walk against the wall. I could not freely cross a room. I fell many many times in that 3 month period. During the day I could manage better but I could hardly navigate the stairs, up or down. Then the tremors became noticeable and impairing. I have tremors in my head where I nod. I started physical therapy and on my second checkin I was worse than when I started. I made an appt with my doctor and kept going. I was getting confused and overwhelmed while driving. And was just having cognitive issues in general. I got my mri pretty fast after they saw me. My results came in fast. But the mri looked normal in all ways except what they said was scattered mild white matter disease, but that the spots weren't indicative of ms. Fine, ok but are my white matter things the culprit? They said it was progressive but not much else. I have an appt with the brain doctor in a million years. At this point idc what they call it. Only how vulnerable I was to another attack like that. I have no one. No family or friends so if this happens again... I will be almost helpless. With how sudden and extreme the symptoms were, I'm terrified what's next. I can't walk again tomorrow? Cognitive failure, etc. I'm almost completely better now except for minor tremors. But I can't discount what I just went through no matter how hard my brain wants to convince me was all ill-timed coincidences is all. I mean they said there's nothing to point to ms but I do have whitespots. And I just got done going through hell. What good is a doctor to me if they are gonna downplay it. I'm 46 and have white spots of much older person. What can that even mean. Could it have cause such an extreme reaction for that length of time? Idk but I'm pretty sure they won't have any answers for me. I still have lingering minor tremors but they get worse when I'm stressed. And you talk of applying cream. Haaaa. Makeup is even funner.

[@italoromeno]

What DMT are you on, Seb?

[@LifeofSebMS]

Hi there! I’m on Ocrevus 😊🧡

[@RodSwift]

​@@LifeofSebMS my next Ocreluzimab is tomorrow. 4th dose in my journey

[@tamaraemmerik8824]

Hi Sebastian. I have been watching a few of your video’s.. I am new to all this and have had all the exams and tests in the past few weeks, mri scans and spin tap (horrible🙄). Next week I will get the results.. I already know I have a juxtacortical lesion and an active spinal cord lesion that litt up at the scan (I could read that in my file) And maybe with that I might already qualify for the DIS and DIT but I don’t know the results of the spinal tap, if that is a if factor or not. I went to the neurologist because end of last year/beginning of this year I fell of the stairs twice and I have a lot tingling sensations in my feet and numbness of some kind. So I am preparing for some bad news I think🫤 It is so weird, don’t know what to think or how to feel and maybe be an MS patient ‘all of a sudden’. I did have lots of pain issues in the last 6 years but never got a diagnosis or explanation (well, fibromyalgia was the final conclusion because they didn’t know) but who knows some of these symptoms could be explained by the MS? I have a lot of questions but I will wait till I get the results on Tuesday, and then I will go from there..🤷🏼‍♀️. I am feeling really really tired. Extra tired this week perhaps, maybe because of the nerves of the upcoming results😑. I could not believe you story when your scan showed about 25 lesions and you were still functioning, and now already having more then 50 lesions. The good news to hear was that the more lesions you have it does not automatically mean more symptoms..! I am so sorry to hear you are experiencing some tremors. My dad has tremors and is taking propranolol for it. And clonazepam for spasms. Now that I think about it, it would not be a surprise if my dad surprisingly had MS as wel.. he has so many symptoms, but no doctor has put them together but now I might have the diagnosis it would not be a bad idea getting him checked out as well! With the tremors and spasmes at night, and pain on the chest when breathing sometimes and sometimes difficulty swallowing and a really numb toe.. I don’t know, now that I am reading a lot about MS some things are falling into place. It is not specifically hereditary, but it can occur more in one family if I am right..? I hope to have good news on Tuesday, but I don’t know! I will keep in mind that I do fit the criteria so I will wait and see the conclusion of my neurologist..! 🤞🏻 Good luck to you for getting the right treatment to manage the symptoms.. 🌼 Tamara

[@LifeofSebMS]

Hey Tamara! I am so sorry to hear about your uncertain journey. I wish you a lot of strength and keep in mind that an ms diagnosis is not the end!! 💪🏻🧡

[@tinksspixiedust]

I take Gabapentin, a lot of it actually. It doesn’t help the tremors, but it does help with the pain that comes on suddenly and leaves just as suddenly. Although you wouldn’t know it did anything after the problems I had all night last night. Propranolol made me pass out. So, it was a no go. What helps me with the obvious tremors is CBD from cannabis. The stuff from hemp doesn’t do squat for me. When the tremors get bad (full body or full arms or full legs), I take .5 to 2 ml of 40:1 CBD:THC tincture. The amount I take depends on how bad the tremors are. I start with .5 or 1 ml adding more if the lower dose doesn’t work. Interestingly, I’ve just been through a bad patch and have had to use it a lot. But lately, I haven’t needed it very often. Sorry that I can’t be more scientific. I’m working on nailing down how much I need depending on what’s happening. I’m also going to figure out if a daily dose controls the tremors-rather than waiting to take it until I’m a mess and can’t function. I’m lucky that I have someone to administer it for me, because I can’t do it myself when the tremors are bad. That’s another reason to see if I can control it with a daily dose that I can administer. This is already crazy long, and I’m sorry for that. I would like to ask about something that I think is related. Before you started having the obvious tremors, did you feel like you were shaking inside at times?

[@LifeofSebMS]

This is very interesting, thanks for sharing! I’ve been experimenting with cannabis, but the smoked one doesn’t suit me (it’s legal here in Spain). I will try the tinctures! Good to hear Gabapentin is helping you! Regarding the internal tremors, I don’t remember having those I’m afraid… 🙏🏻🧡

[@tinksspixiedust]

@@LifeofSebMS Smoking doesn’t work for me either. In my experience: Vaping is good to get it in fast, but it doesn’t last. Edibles take a long time to kick in. Tinctures go to work slower than vaping but faster than edibles and last a reasonable amount of time. For me, the huge downside of being able to effectively treat symptoms with cannabis is the cost. Until it was made legal recreationally, I was able to get the products I needed at the doses I needed for a reasonable price. Now, it’s all difficult. I’m hoping to move to a different state where things are better weed wise, but I don’t know how soon that will happen.

[@LifeofSebMS]

Thank you for explaining how the different forms help 🙏🏻🧡 hope you get to move to a better state soon!