Quote:
Originally Posted by Sandrine
Thanks so much for the reply!
The neuro just did one test, for MG. My symptoms are droopy lid, double vision which used to be intermittent but just last week became permanent and really bad, although it gets even worse as I tire, the side of my smile where I have the droopy eye is weaker too, I get a hoarse voice after talking for short periods of time, heavy feeling chest like it's hard to get a breath in. Swallowing doesn't feel like I have a strong motion if that makes sense. It feels a bit weak, and like I have to be upright and let it wash properly. Often things just sit in my esophagus, and in fact I am used to that sensation - pills and food just sitting there until I wash it down with something. I also have been having these tremendous esophageal spasms that are excruciatingly painful!
I have a lot of other symptoms, many could also be part of my other illness cryoglobulinemia. I have neuropathy in my arms, hands and feet. Lately it is really bad in my hands and fingertips. It seems as though my right hand, which is my dominant side is a bit clumsier than usual. I have terrible GERD, and have had an asphyxiation pneumonia during a routine colonoscopy that almost killed me. The doctor tried to claim I had been eating - of course I hadn't. I suffer terrible daily migraines behind my eyes, and light sensitivity. I don't want to go on too much!
I am interested what other testing I should have. The opthalmologist said I have lost control of my eyes for some reason,despite still having 20/20 vision. They are weak and wander. He said it could be the cranial nerves, or MG.
I really appreciate any help I can get. My double vision is killing me, because using my iPad while I rest (which is a lot because aI have major fatigue from the cryo) was my favorite thing to do, and now it is an extreme frustration with blurring and words everywhere.
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There's more than one test for MG. My neuro just ran one for the MUSK antibody and said it was the most likely to be positive because my symptoms are most prominent around my face, throat and chest. I have a 4th nerve palsy (which sounds similar to your "wandering eye"-- the ophthalmologist said that the muscles that control the eyes are weak and can't hold both eyes on track, especially late in the day), difficulty swallowing, difficulty breathing (feels like so much work to take a full breath), and some weakness of the facial muscles.
They did a repetitive nerve study and a standard EMG on me-- they've discussed doing a single fiber EMG but are waiting for the symptoms to get bad again. I had a bunch of testing with pulmonology, a modified barium swallow to watch my throat muscles work, an echocardiogram to rule out pulmonary hypertension, and an MRI and CT to rule out tumors and MS (that was very early in the process when my only symptom was double vision).
My neuro mentioned an ice pack test and a Tensilon (?) test that can be done in the office, and he gave me Mestinon to try and told me that it's partly diagnostic.
I hope some of that helps-- I'm brand new so I don't know much yet, just what they did for me.