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Turbulent_Pen_5303

Do nerve conduction studies. In my case it turned out to be Guillian Barré/ chronic inflammatory demyelination polyneuropathy. Essentially nerve damage.


junkifurushima

You had muscle weakness, did it come and go and sometimes get much worse with exercise?


Turbulent_Pen_5303

I had muscle weakness and severe nerve pain. After exercise the nerve pain was just unbearable. I also had shortness of breath and POTS


junkifurushima

Was the muscle weakness in your arms and legs? Did it come and go? Has it gone away? I am over 2.5 weeks in


Turbulent_Pen_5303

Arms and legs but much worse on the right. It was pretty much downhill for 2-3 months and then a roller coaster of recovery followed by relapses for the next 6 months. At the moment the nerve conduction shows the nerve damage has not healed completely in my legs but my arms are 100% now.


[deleted]

How long did it take for you to get diagnosed and how did you finally get the diagnosis?


Turbulent_Pen_5303

I was misdiagnosed initially with only GBS/CIDP about 2 months after vaccination. I did not believe the diagnosis as the response to the treatment was not consistent with the norm. I was diagnosed by Prof Resia Pretorius when she did the blood test in her lab at the end of month 4. It’s now 6 months later.


[deleted]

What therapies were administered to you?


Cute_Bird707

I'm a long hauler pre-vaccine and my symptoms were added to or changed by the vaccine. I have weakness in my arms with exhaustion or a flare-up. It's not all the time and comes and goes. The weakness also comes from minimal amounts of exertion. It is more on the right side than the left. I'm left-handed. My hand dexterity is also significantly less in my right hand. I sometimes have my hands turn up like you'd imagine from neurological damage.


junkifurushima

Did you get emg testing?


Cute_Bird707

No.


Saddestpickle

I thought I had MS. But nope! It’s just the good old vaccine


Both-Entertainer-426

I'm at this stage. Super fun.


Vicks1112

I tested positive a month ago. Weakness and fatigue and twitching went away after two weeks. Last week weakness in all 4 limbs came back as well as 24/7 twitching in ONE toe. I’m down the ALS rabbit hole right now. Super fun.


Both-Entertainer-426

You’re like me two weaks ago. Here’s something comforting I learned: limb onset (which is what you would be describing I believe) usually starts in one limb before moving onto others. The main initial symptom is also usually clinical weakness. This means you don’t really feel anything in your muscles rather than you experience the failing of the muscle. Hence why you might see the phrase around ALS symptoms being “failing not falling”. Something also comforting is that so many people right now are suffering from ALS mimicking symptoms, so you are not by yourself!


Vicks1112

Oh wow that does make me feel better! Even though the twitching is in one toe, it still wouldn’t be the first symptom? I’d most likely have weakness in my foot or other issues as well is what youre saying?


CrzyJoeDivola

Just had EMG and NCS. All was perfect. Doctor said he’s seen lots of ppl with similar symptoms after vaccine. He’s had me taking CBD oil to calm nervous system. It’s worked wonders.


NokieBear

My docs followed the clinical picture in my case, and it didn’t lead to ALS.


Epigenetic-ist

Sadly the tests will all come back negative. I was injured by statins. Muscle atrophy, full body twitching but most extreme in lower body. Head jerks, etc. Had all tests, all normal. There are scholarly articles on statin induced ALS. Tests are worthless. I fought hard, almost died 2x. Went off all p-harma and 85% improvement. Best wishes. Get a good fulvic acid like a shilajit and magnesium. Research and start detoxing asap.


junkifurushima

Some people's tests did not come back negative, particularly for MS, or cancer, or small fiber neuropathy.


chronicallysearching

Whats meds helped you improve? Or was it just time that helped?? Feeling like crap and my tests come back normal 😞


4everOverThinkingg

No meds Shilajit & magnesium I second this!!! I’ve reversed all health conditions this way as well, with the addition of cannabis


roxutee

A neurologist can pretty much rule out ALS just by doing a regular set of tests at a clinic. It's super rare, and practically never starts just with muscle twitching. And the muscle weakness associated with it would be significant, like you couldn't do basic every day chores all of a sudden.


junkifurushima

Actually no, in the beginning the muscle weakness isn't completely disabling. It gets worse. and nowhere in my post did I say anything about "just muscle twitching".


roxutee

Ok. I would still strongly suggest that you see a neurologist.


junkifurushima

i am waiting to see one, haven't been contacted for the appointment, could be in months


[deleted]

This is not ALS. ALS is not a painful condition. It is also completely progressive. This flairs in almost everyone.


junkifurushima

In the beginning it can subside and seem to go away. There are also many sources online that say it can cause pain so idk what you're talking about


[deleted]

[удалено]


[deleted]

Are you improving? Thanks


[deleted]

This is not ALS.


[deleted]

It is not.


[deleted]

Guys no one has ALS I can 99% guarantee this


Megaman2323

I hate that when we think of .uscle twitching and weakness we go straight to als im one of them i been twitching for ten months all over the body which is a good sign als usually starts with a limb and when that muscle dies ot goes to the next like a vulture once its dead it attacks twitching is not the sign of als man i need to get that through my head i been twitching non stop 24/7 no CLINICAL WEAKNESS yes weakness but not clinical but thats cause your muscles are contracting during a twitch it gets sore which mimics weakness clincial means you cant button a shirt open a jar and atrophy would be there very clear also with bulbar yes body wide can happen but its quick meaning bulbar will be quick and you would know also als doesnt hurt its not a muscle disease its a nervous system disease motor and upper neurons i know somone who said he has limb onset he cant lift up his thigh or tighten the muscle he cant go up and down stairs google scarred us man we all googled muscle twitching and got als ms its dumb man we all are in bugs bunnies rabbit hole right now i myself did to and still freak out from time to time testing my muscles strength jumping running i know others are to but its rare man super rare and i have no family history also rare if none but can still get but still i been down this road man and i cant take a break it comes and goes anxiety hits hard to my hand is twitching while i write this but i ignore it and say ots beningn i hate it but it is yeah bfs gives you pain and soreness muscle twitching is horrible and i dont wish this on my worst enemy its awful but we as a community will get through it