Help with symptoms

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Robbin88

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Hello, I’ve been reading others posts trying to get enough info to calm my nerves but I would like to hear from someone directly.

I’ve had muscle twitching and cramping 80 percent of it is coming from my left thigh but the rest is all over my body. I do have muscle fatigue on left arm but I have not been dropping anything or unable to do things. It’s only been 2 weeks since this started. But I have an overall feeling of unwellness and muscle agitation. I saw the neurologist today and he said my reflexes are good but he did order an emg study (he did say I probably wouldn’t have strength loss or atrophy after only 2 weeks).

From what I understand those with als don’t really feel it. You just start noticing you can’t do things you used to. The cramping and twitching and muscle fatigue and muscle (I don’t know how to describe it other than agitation) is not something that you have at least as a first symptom. Is that correct? Also if you did have the cramping and twitching would it be in only one muscle and how quickly does it move to other parts?

Thank you and god bless.
 
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ShiftKicker

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Hello there-

Hoping you've read here: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

It sets out a fair amount of information and answers much of what you've asked. It sounds like you're on the right track with regards to seeking advice from a doctor. An EMG can indicate issues in ALS before a person notices themselves, so it's not exactly clear what your doctor meant. It's probably best to wait to see your neuro before focusing specifically on ALS, as there are many reasons for twitching, etc (as you will read in the link provided above).
 

Robbin88

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Thank you so much.
 

lgelb

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You are correct that loss of function is far more indicative of possible ALS or some other neurological disorder than cramping or twitching, though those can occur at the same time.

Your neurologist is trying to rule out many disorders, not just ALS, with the EMG.

Best,
Laurie
 

Robbin88

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Hello again. I have read the sticky and while it’s comforting if you read other stories it contradicts the sticky. It looks like some have started with just twitching. I started with twitching in left leg mostly (same spot lights up like a firecracker). I do have occasional twitches in the other areas but it’s mainly on my thigh.

soon after I developed cramping all over. My arms, and my legs mostly. It’s only been 3 weeks and I feel pretty horrible over all. I definitely have muscle fatigue in legs and arms. Emg and exam both came back normal which I am grateful. Trying to convince myself this is not als so want to one more question. (Hopefully;)

is it possible for als to start rapidly like this?
Would the cramping be widespread or localized to the leg with the twitching? I want to believe this is cfs but that is also a rare disease so hard to believe one over the other. I know it says clean emg=no als but dr google says otherwise. Any advice would be most appreciated and to
All that answer me suffering with this horrible disease I really pray that new treatments will be available soon. Thank you.
 

lgelb

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We have seen no "twitching and/or cramping onsets" here in which clinical weakness was not a close companion. Nor does the pattern you describe resemble ALS. You can always find random Internet stories that tend to be projected anxiety, clickbait, and trolling. Dr. Google is not reliable in that regard and never will be.

BFS is not rare. It's pretty common, actually.

I'd take your BFS and live your life, but keep in touch with your internist and reach out if you feel worse systemically.

Best,
Laurie
 

Robbin88

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Ok I’m almost 2 months into this and I want to know if I should pursue further testing. I have intense cramping all over my body 24 hours a day. Oddly enough my twitching has gone down to practically nothing and that actually has me more worried.


I had an emg 2 weeks into
Symptoms and showed completely normal (not sure if it was done too early). Exam was also normal. Neurologist said I had cramp fasiculation syndrome ( rarer type of bfs).

I have muscle fatigue in both arms and legs but still have strength.

I’m worried that I’m just going to lose strength one day. Because some stupid websites say that If you have cfs you should be followed for a year or more because it could turn into als.

question is: Have you seen with your members als having cramping all over in the beginning? Or is that not a sign at all? Should I be more or less worried that my twitching went away? Have you seen members have cfs (not bfs) progress to als? Should I get a second opinion?

thank you for your time!
 

Bestfriends14

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Asked and answered already, so no need to repeat.

Please read this very useful link that one of the members so kindly took her time to provide you. Your answers can be found there.


Good luck to you.
 
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