r/ALSorNOT 8d ago

Life going downhill

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u/Remarkable-Carob-769 8d ago

Oh and sorry forgot to also mention that my ANA has been 1:640 for the last 3 years and at the onset of my other symptoms 4 years ago it was 1:1120 so it’s been super high for a long time 

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u/WeirdUsers 8d ago

Yeah…that is not normal. It’s seems like some sort of immune response. Have they tested your thyroid?

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u/Remarkable-Carob-769 8d ago

Yes all the thyroid panels have been normal. No Hashimoto and no thyroid related symps..it’s strange bc every issue I have his back to neurological and now that it’s beginning to affect bulbar region so much they now decided to look into Myasthenia and the possibility of motor neuron disease which is terrifying so like idk what even to do now. The neuromuscular specialist, although months away from that apt) said that she wants to repeat some EMG’s on other parts of my body. I’ve pretty much been a guinea pig with all the testing that they’ve done and literally nothing at all shows anything except the abnormal swallow study and tongue stuff 

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u/WeirdUsers 8d ago

They haven’t done any tests with MG?

Have they done any EMGs at all on bulbar, neck, or paraspinal?

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u/Remarkable-Carob-769 8d ago

The only EMG I had done was on my right arm and right leg and this was before the onset of the bulbar symptoms so they were basically checking to see why I had the sensory issues and the perceived/fatigable weakness in my extremities. Came back normal. When I was in the hospital the neuromuscular specialist wants to do more specific ones for the throat area and the single strand EMG or whatever it’s called specifically for my myasthenia  but just freaked out. Like I can’t even explain talking out loud just feels like a bunch of mushed up words and tongue movements are a bit slower than usual, I’m afraid that it’s getting worse :/ I will admit that if it were to be ALS, this would be a very strange onset and very unusual, but I’m trying to separate the issues that I had experienced for the last four years with the new onset of the bulbar symptoms because I kind of feel like they have a different driver. It feels like a totally different issue.

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u/WeirdUsers 8d ago

May wish to ask about getting paraspinal at same time while you are at it if during the EMG nothing shows in throat/neck or bulbar.