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I would like some opinions on whether this is ALS or not. 25 years old
Hello everyone, I am a 25 year old male that has been experiencing widespread twitching throughout my entire body for about 2 months. Head to toe. My grand mother had ALS at 60 but everyone in my family is saying it’s sporadic. Her mother did die of dementia at 88 and no other family member has been affected, as my grandma had 3 children that are all in their 50s and have no symptoms. I have a tremor in my left hand/arm and left shoulder is harder to hold up when laying down. I’ve noticed muscle loss in my left arm. All my joints are cracking and I have bad shoulder pain. I have been to two professionals that did neuro exams and everything came back perfectly normal. Neurologist kind of dismissed me saying my tremor was physiological and then diagnosed be BFS. Didn’t even look at the atrophy. Neuro didn’t order EMG and PCP actually advised me not to get an EMG. This did all start after the birth of my child where I went a few weeks extremely stressed with no sleep and after taking anxiety meds that messed me up. What still gets to me is the muscle difference between my left and right upper body. Seems as if I have split hand but my fingers are still strong. Neurologist straight up told me I’m sure this is not ALS, saw PCP for a second time and he said I do not think this is ALS and I think it’s all in your head.
I now have a scalloped tongue and a clicking in my throat when I swallow. I have atrophy in the forearm, hands, and bicep. But no one seems to believe me. Should I keep pushing for this?
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I’m so sorry to hear that you are so afraid that your fasciculations, could be indicative of ALS! I have been through a similar experience. I’ll never forget, when, as a young man, I read the story of Lou Gherig and his battle with having ALS, and I thought to myself, what a nasty disease for anyone to get! So, when I got fasciculations, in my forearms, I was worried, like you! My best advice would be to see if you could get another opinion, from another Neurologist! It wasn’t until I had seen three different Neurologists, that I finally got somebody that investigated all of my symptoms, took numerous tests ( EEG, MRI, CAT SCAN, etc.), and got the correct diagnosis! Thank goodness that it wasn’t ALS for me. What the third Neurologist came up with is a treatable, neurological ailment. I was diagnosed in my 30’s, and I’m now approaching 80, and, with the proper protocol of treatment, I’ve led a good, relatively normal life! The first neurologist that I saw, attributed my fasciculations and other symptoms, to varicose veins! The second one said it was all in my head! So, there is hope for you to get the right diagnosis. Perhaps it is a benign ailment, which would be great! For your own peace of mind, though, getting a second opinion from a respected and knowledgeable neurologist, would be advisable! Mayo Clinic is who Lou Gherig turned to, when he was having symptoms! Wishing you the best in your journey to find the correct diagnosis!
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1 ReactionMayo Clinic is doing great to help to find out.
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3 ReactionsHi I am sorry for the issues you are having my father was diagnosed for als at Mayo Clinic phonix Arizona in 1990 every one else gave him the wrong diagnosis but you’re simptoms are deferent from his Al’s eat his muscles started with hands where he couldn’t do anything with his hands just paralyzed with no movement slowly down to his legs and lastly the chest your symptoms are deferent however you can get the right diagnosis at the Mayo Clinic in Scottsdale Arizona hopefully you have no ALS its nerve pain or something else that there’s nothing to worry about good luck with your diagnosis wishing you well
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1 ReactionI recommend that you see an ALS specialist, and not look for a diagnosis online. Your PCP should refer you to the right doctor. Don't let doctors brush you off until you have solid answers.
Good luck.
Jim
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5 ReactionsInstead of asking this group of knowledgeable laymen why not go to the source instead. Since there’s a possible familial connection you’ll need genetic testing as will family members. But since there’s percentage is low you need to be tested by a neurologist but see your PCP first who may be able to help guide you.
https://www.als.org/understanding-als/who-gets-als/familial