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plac8170

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Hi everyone. Thank you for welcoming me onto this site.

I read the sticky, so I'll try my best to adhere to the statements there.

I'm 27, female, and have been having concerning symptoms since mid-September 2018.

Symptoms first started in my left hand and forearm. Started with twitching and a sensation that my hand just was more clumsy than usual and wasn't working right, felt like I couldn't turn a key or doorknob, etc. This lasted for about a month on and off until I saw a neurologist. Neurologist did a full exam and said everything looked good. Symptoms never went away but I was fine mentally for a couple months until about December 2018...

Symptoms at this point were body wide twitching (literally muscles I didn't even know existed twitch), legs feel like they're stiff and not working right, and that they may collapse from underneath me. I ignored this and chalked it up to anxiety until a couple weeks ago.

Symptoms currently going on now when I went to my PCP are severe pain and cramping in my hands. It feels like joint pain sometimes, but the thumb and pinky muscles on both hands are constantly cramping. Still have the twitching everywhere. I have atrophy in my hands, forearms, and right calf and severe pain in my hands has now spread to my forearms. I also have cramping in my feet, shoulders, etc. I feel like I'm having trouble typing (it hurts to move my fingers and hands to do it and they feel stiff) and I had someone notice that I'm "walking weird" and wanted to know if I hurt my leg or something.

I've been tested for hormonal and vitamin deficiencies, MRI, CT scan, Lupus, Rheumatoid Arthritis. All normal.. Literally the last thing left is the EMG at the end of April.

My question is: Does this sound like anything anyone has experienced pre-diagnosis? Do the muscle cramps associated with ALS have a specific feeling to them or pattern?

Thank you for taking the time to read this. Your wisdom is very much appreciated.
 

KarenNWendyn

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The severe pain and pain with movement goes against ALS. It sounds more likely to be an inflammatory arthritis. Atrophy can occur in the muscles surrounding the joints. It’s also reassuring that your neuro exam was normal. The time course also seems a little fast for ALS.

The twitching means nothing. I’d advise you to ignore the twitching.

You say tests for rheumatoid arthritis and lupus were normal. I assume you had a rheumatoid factor (RF) and ANA.

There are varieties of inflammatory arthritis where the RF and ANA are negative. Some are viral. Some are chronic. A good joint exam by an internist, or preferably a rheumatologist, is the best way of diagnosing these. Occasionally the sed rate (ESR) or CRP are elevated, giving a clue that you are dealing with an inflammatory process.

Are you stiffest upon first getting up in the morning? That would also be suggestive of an inflammatory arthritis. Other findings such as rashes, fevers, fingers changing color in the cold, or mouth sores, if present, would also be more in keeping with a rheumatic condition.

Sometimes various conditions, including ALS and inflammatory arthritis, take a while to declare themselves.

Meanwhile you have the EMG next month, but I’d suggest a good repeat exam, including your joints, in the meantime.
 

plac8170

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Thank you for your reply, Karen.

I have had an ESR, CRP, ANA, etc tests done this past week and all were normal. The pain is actually absent when I wake up and gets worse throughout the day. Horrible at night.

When my PCP examined me he seemed alarmed not so much by my complaint of the pain but of the atrophy he saw and that I had lost significant weight (over 20 pounds) in just a month despite gorging myself on bad food and not exercising. He checked my reflexes and while the left leg was normal, the right legged “bobbled” in the air a bit when it should have went back down? I have an appointment with my neurologist this Monday at the request of my PCP just to re-do a full exam.

I’m hoping for the best.

Thank you again!
 
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