Weird Situation

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jddncb556

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Hi everyone! My name is Dylan, I'm 20 years old and have an unknown neuromuscular disease that caused limb paralysis and muscle atrophy by birth. The reason I'm here is that in July 2020 my right hand began tingling nonstop and hasn't ceased since. I wasn't terribly concerned as no muscle weakness (relative to my amount of strength) has occurred. Recently my hand has begun to twitch though, accompanied by soreness (the twitching started in April, lasted 2 days, and then returned on Friday, disappearing Monday and Tuesday but returning again yesterday). I read the stickies and know sensory symptoms lead away from ALS, but I've had sensory symptoms long before my twitching, I'm just concerned that what I'm feeling could be ALS, I do acknowledge that I'm a hypochondriac though. Any advice/help you can give would be appreciated greatly.
 

ShiftKicker

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Hi Dylan-

I would recommend you visit with your regular doctor at least. Even better if you are already under the care of a neuromuscular specialist for the neuro disease you already have experience with. Not sure why you would arrive at ALS when you already have something going on, so it's really best to speak with whoever is providing you medical care for your existing neurological condition.

Take care, and hopefully your doctors will be able to provide you some feedback on your symptoms soon-

~F
 

jddncb556

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Thank you for replying! I'm worried because doctors have never been able to diagnose me with anything concrete. I've been diagnosed with a variety of diseases, but none ever stuck. I just recently started seeing a neurologist again and he's referring me to a neuromuscular specialist. I guess the lack of clarity around my condition is what is leading me to this conclusion. Just based on the symptoms though I guess I shouldn't worry about ALS specifically?
 

Nikki J

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seeing a neuromuscular doctor sounds like a good plan. Preferably someone at a major medical center/ teaching hospital. It does seem likely that this is related to your ongoing condition. You need someone who is an expert diagnostician who can also pull in other specialists. If it has been a while since you were under care/ investigation a neurogeneticist might be someone to ask about. Let us know what they say
 

ShiftKicker

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Nope- and if you have a read of the link in the "Read Before" link, you'll see just a small list of the things that share some of the same symptoms as ALS. Glad you're getting an appt with a neuromuscular specialist and hope they'll be able to see a recognizable pattern to your symptoms and give you some answers. It's no fun being in limbo- and it can lead you to try to find links that don't really exist (like to ALS!).

Best of luck and let us know how it goes.
 

jddncb556

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Update: I have a CT scan scheduled for next week. I will also be scheduling an appointment with the neuromuscular clinic. As far as symptoms go, the twitching has spread to my left thigh. I appreciate all the comments, trying not to dwell and get anxious
 

Bestfriends14

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Sounds like a good plan. Please update after your neuromuscular appointment. As you are not evidencing ALS symptoms, it's best that you wait until you've spoken to a neuromuscular specialist and then update after that. Coming to this site again and again can further exacerbate your anxiety.

Good luck to you and take good care
 
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