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Cecilie

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Hi!

I am a 31 year old woman who has been experiencing twitching and muscle tiredness for a while now. It started with some strange symptoms after the birth of my youngest son 4,5 years ago (vertigo, paresthesia, raynauds muscle tiredness and swallowing issues). They found a positive ANA and scleroderma antibodies and have been monitoring this the last couple of years. But, they still havent found anything pointing to this disease, and the rheumatologist says it looks more neurological.

I have hyperreflexia 3+ all over (neurologist said he would see very few patients with that strong reflexes), positive hoffmans on both hands, some hypotonic muscles and POTS like symptoms. There has been found some bilateral calsification on CT of my brain, a white matter lesion and small cyst on MRI, and some asymmetry on PET.

Spine MRI showed some degenerative changes and two hyperintense spots at the midthoracic level, plus scoliosis and flattenes cervical lordosis (which were not there a year ago). EMG looked normal in march.

Other tests show spasms in esophagus, lymphopenia, positive VGKC antibodies and MAG-antibodies + plus anti smooth muscle antibodies suggesting hepatitis (but they did not find any of this relevant).

My main symptoms now are the muscle tiredness, back and neck pain, swallowing issues, cramping (especially below my ribs where the muscle can stick out like a hard lump, very painful) and GI-symptoms, plus all the weird sensations in my arms/legs/face. Its like popping/jumping/tickling beneath the skin, sometimes visible sometimes not. My fingers/toes can suddenly jump repetedly by themselves, and if bumping into my thumb muscles they start to tighten inwards. If tapping below my mouth or under my upper arms it starts to «jump» or tighten.

If going up the stairs it feels like my legs are full of lactic acid, and my arms get tired just from stirring in a bowl (need to rest the arm to keep going, starts to ache like mild toothache). My left arm feels weaker than the other, and lots of popping sensations. Just holding my phone feels exhausting and K tend to lean my arm against my waist to hold it up .

My back/neck feks tired and I am having some trouble holding myself up in longer periods at a time. And in addition my arms/legs and face often starts to Shake/vibrate after being used (smiling alot, carrying bags etc).

My main consern is trouble swallowing. Earlier I just had problems with food getting stuck in my esophagus, but now the food gets stuck in the back of my throath and I am struggling to get it down. Choke on liquids, feels weird to drink. Throath feels week and feels hard to talk. Sometimes my voice crack and Its difficult to pronounce words (jaw area feels weak).... This seem to vary in intensity.

Could this be ALS starting? Is it possible to have a normal EMG in the beginning of symptoms? And could the symptoms come and go and vary in intensity?

-Cecilie
 
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lgelb

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Hi Cecilie,

A normal EMG in March after years of symptoms pretty much rules out ALS, nor are you describing it. And yes, it's a relentlessly progressive, not intermittent disease.

I would get a second neurology opinion and a second rheumatology opinion, given that the imaging is showing changes.

Best,
Laurie
 
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