Worried about ALS

Jgt1982

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Sharon
Hello,
I have been reading around here and finally decided to post. I did read sticky before posting and thank you for taking the time to read. I’m 37 and this past August I was in ER for heart palpitations and high BP. I had all sorts of blood tests everything came back normal. I did test positive for Lyme antibodies and 1 band but CDC doesn’t consider “positive” without a certain number of bands. I’m also seeing a Lyme Literate Doctor and being treated based on symptoms. Back in August I also developed a ton of cramps in my legs, feet, legs and arms felt weak, and muscle twitches. I have a burning pain on top side of my foot when I step down. Also a pain in my forearm I’ve had for months. I also have internal vibrations Some have gotten better but Muscle twitches are still happening all over but mostly in my legs. I also have internal vibrations in my legs. I notice I have started to drop small things more often ( like cap to milk or my medication) but I’m just wondering if it’s because I’m shaky and noticing it. I have had two separate exams by neuros in Boston. Both said “stone cold” Neuro exam and no concerns for ALS. No decrease in muscle tone or atrophy. They couldn’t figure out why I have twitching and said it can just happen. They didn’t think it was necessary for EMG. I have let my mind get the best of me and I’m scared I have early stages ( Muscle twitching). I also have developed what seems like a cold that has been going on for over a week now. Not Covid- I got checked. My questions are :

Does ALS just start with twitching or internal vibrating ?

Can it be all over - like muscle pains in arms and and legs and feet?
Any words of advice would be greatly appreciated. I can’t get this horrible thought out of my head and it is consuming me.
 

ShiftKicker

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Hello- you posted a whole variety of things that aren't included in the normal constellation of symptoms associated with ALS. It sounds like twitching brought you here, but with everything else you have listed, it's really not at all like ALS. While you can be reassured about ALS (as the doctors have already told you as well) it sounds like you will have to keep looking elsewhere for cause of symptoms if they continue. It sounds like you're having a tough time of it with all the pain, burning and vibrations, but this is not how ALS starts.
 

Jgt1982

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Sharon
OK. Thank you for your help. I Googled muscle twitching and ALS was the first thing I saw so I got scared. I appreciate your response.
 

lgelb

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LLMDs are typically addressing your wallet, not an actual bacterial infection. I strongly advise that you reconsider antibiotics if you have been on them for over a month, in consultation with a "traditional" infectious disease specialist.

Treating Lyme based on symptoms on a long-term basis, which can be subjective and subject to the power of persuasion, is not supported by scientific evidence, and can be very harmful to both your health and bank account. That you could have an infection with an atypical lab result does not mean there is reason to go down the LLMD rabbit hole, rife with quackery.

But there is no reason to suspect ALS, either.

Best,
Laurie
 

Jgt1982

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Sharon
Hello,
I hope you can give my reassurance. I have had muscle twitching all over since August. It is now mostly in legs and feet but still happens on other parts too. I also had developed a burning & achy pain in my left foot back in August. My arches are still twitching and now the pain has spread to my right foot. So now it’s both sides. Have seen 3 neurologist but none of them ordered EMG as they didn’t see need for one since I have no muscle weakness. I also wasn’t having these feet cramps back in August. I’m able to walk but it is uncomfortable. Have had every test under the sun and everything looks great. I also had internal tremors which have mostly subsided but whenever I use my muscles ( ride bike or run) I get a shaky feeling. Does this sound concerning?? Thank you for any input.
 

Bestfriends14

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Nope, not at all. Please keep working with your docs. Should you have further questions, please read the "Important: Please Read Before Posting" sticky at the top of this sub-forum. Your symptoms point away from ALS.

Good luck to you.
 

Jgt1982

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Thank you for your response. It’s greatly appreciated. God Bless
 

lgelb

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I would take a hard look at your diet, hydration and exercise, esp. walking and stretching. Many people are off their routines these days. You may need to build back up.
 
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