Progressing symptoms

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jsmith8383

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Hello everyone I’d like to get some feedback on some symptoms I’ve been having.

Starting back in march I started to notice some twitching throughout my body. The twitching has became more prominent as the months have gone by. It has also been accompanied by tremors my hands and finger are mostly affected. I was hospitalized in April and my CK levels were over 9,000. My ck levels have since returned to normal.

I had an emg performed in July on my right arm and leg because I was experiencing most shaking and weakness on that side. The neurologist told me he saw fasiculations but nothing more. I was proscribed carbomezopine and sent on my way. I’ve done everything possible I’ve changed my diet. I’ve started taking vitamins every deficiency vitamin to try to normalize the way I feel on a daily basis. I’m constantly fatigued no matter how much sleep I get. Even on the medication I’m on I still get twitching almost constantly throughout my body especially after lifting something or in the evening after I get home from work a lot of the twitching are violently and sometimes cause some jerking movements.

Idk if it’s just in my head but I feel like I’m losing muscle in my right forearm the muscle feels more defined and tight. I constantly cramp all throughout my body. Ex. Just cooking dinner and stirring something in a pot and my hand will cramp up. I’m 28 for the most part pretty healthy and active I am a smoker. I have had every blood test ran imaginable all have come back clean. if Anyone has any advice or knowledge about what this could be please let me know. I know the chances of als are so slim but I’m running out of options as to what this could be.
 
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I don't see ALS in this picture at all. What was the final diagnosis when you left the hospital?

Carbamazepine is a powerful drug with its own side effects and I would want to be sure (1) there is a clear reason why you should take it and (2) the dose has been adjusted to the level that is most beneficial and safe for you.

It's not a good idea to cycle through vitamins, either, especially on an anti-seizure med. A good internist can help you figure out how to feel your best, whatever your medical history.

And, of course, you can dramatically reduce the chance that you are hooked up to oxygen and a walker in your later years, by quitting smoking.

Best,
Laurie
 
The hospital diagnosed me with Rhabdomyolysis. My liver enzymes were also very high at the time. They then referred me to a neurologist where they did the emg. The neurologist was kinda baffled at first because the emg came back clean but had fasiculations in my right bicep(I get them all over though, back, butt, legs, arms, shoulders, and in between my index finger and thumb)

so he ordered a bunch of complex blood tests that all came back clean. He then said it was most likely BFS or Cramp fasciculation syndrome. Which at the time was a huge relief because I like most people on this forum think the worst.

But almost three more months have gone by and the carbo was supposedly supposed to help and has offered no relief with the twitching, cramping, shaking or fatigue. I’ve tried to get on something different but the neurologist just upped my dosage instead. I’m just at a loss as to what this could be and sadly in the back of my mind ALS is always there
 
Rhabdo doesn't come and go like that, without a cause. That's what I was asking about -- physical exertion, a medication, something like that.

If the carba isn't helping, I'd ask about tapering off it. And find another diagnostic resource.

ALS isn't in this picture.
 
jsmith, you wrote… “Which at the time was a huge relief because I like most
people on this forum think the worst.”

Then came the… BUT. We see this countless times. “twitching, cramping,
shaking or fatigue are really not symptoms of ALS onset.

“the emg came back clean.” Regardless to Neuros comments a clean EMG
rules out ALS.

Back up a sentence… “He then said it was most likely BFS or Cramp
fasciculation syndrome.”

Pretty much that is his highly educated, highly trained diagnosis.

(Maybe you’re continuing Google, searching websites… reading over this
site every time you have twitch or cramp.)

Finally...

“I’ve tried to get on something different but the neurologist just upped my
dosage instead.” He’s made his diagnosis decision and it appears there’s
where he’s at.

Now… you should be too.

Try hard not to think of ALS but focus on working with your PCP/Hospital
doctors to resolve the issues you are currently concerned with… that are
really not ALS related.

Hope all gets resolved soon
 
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