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lhagsjr

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Im sorry If some Pals take offense to be posting here but Im very very scared and also very confused. Im only 28 years old and have been married for slightly over a year. I had an EMG done by an ALS specialist in early June, which came back as possible myopathic in nature. I did not have ANY fibrillations or positive sharp waves. No spontaneous activity. However, I did have increased insertational activity in some muscles and some of the responses the muscles had when they were stuck were short to normal in amplitutde and length. Which according the ALS doc points towards possible myopathy.

My symptoms are muscle twitching which vary in nature and location. Sometimes they are not very intense and you can barely see them, other times they are so intense they jerk the limb they are affecting. (IE if my bicep twitching my entire arm jerks). The 2nd and most alarming symptom is atrophy. The thing is, its is evenly distributed. Both calves, both arms, both shoulders, etc have all lost muscle but not enough so the average person could notice but I notice it big time. Its like my entire body is being affected at once which I understand is usually not the case with ALS. From what I have read, ALS usually take one limb out and a time. The odd thing is, I can still walk the same and I havent really noticed a lost of strength(although I dont do much physically). The atrophy is really bugging me out.

Sorry for my log story, back to the question. What did the EMG show in the Pals on this forum?
 

patricia1

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Hi Annmarie If the neuro said you dont have ALS How does he explain your symptoms and what is your DX I am so confused and I am sure you are to. Pat
 

Debohern

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We've been on a whirlwind tour the last few months as well! My mom developed bulbar symptoms (slurred speach, non productive cough, choking), went to neurologist, had the nerve and muscle tests, he and his partner said her EMG was OK but said she probably had ALS. The one neuro was taken aback by the appearance of her tongue, thickened, white coating, and split down the middle. I never see too many symptoms like this. She's been a very active woman (78 years old) but hasn't missed health problems in her lifetime, aneruysms (5 of em) in her cerebral circulation, aortic valve replacement, breast cancer, degenerative osteoporosis with recent kyphoplasty, nerve blocks and steroid injections just so the excrutiating pain is lessened (had that pain for almost 9 months). Her other symptoms are a cough that always ends with a burp or hiccup and choking. I had her discontinue the statin drug she was taking. Incidentally, the third neuro she saw here studied all of the previous tests, redid the MRI and did a CT of her neck and throat area. Nothing and he is convinced it is NOT ALS. She is the greatest woman in the world in my book and we just got done talking (as we do daily). She's a trooper and willing to try almost anything to improve. Anyway, anyone else have any of these bulbar symptoms, tongue symptoms, etc. as the initial presentation? Thanks for listening! Unfortunately, I work with two ladies whose mom and sister have ALS so I'm a little too familiar with it!
 

patricia1

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Hi I have bulbar symptoms My tongue is white with a crack down the middle I dont know if that is from the ALS I never got an answer on why I have that. I heard it could be a hairy tongue or a geografical tongue Hope you get some answers Pat.
 

Debohern

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Tongue symptoms?

That's what I was wondering about. The neuro that looked repeatedly at her tongue was of Basque descent and kind of difficult for me to understand but he said, "Another patient came in today for a second opinion and as soon as I looked at his tongue, I knew he had ALS." But mom's second Dr. said he knew nothing of that sort. So, hopefully, we'll see more posts.
 
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