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Help Undiagnosed Neuro July 3rd
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kathylee

1 post
28-Jun-2008
7:37 PM 		I seem to have most all symptoms except eyes tho I've had this spooky sensation in my left eye for about a week off and on. It feels like my top lid is lose on the eyeball.
They don't curently have a muscle specailist at the university hospital I go to. This will be my 2nd visit with her. She is a movement specialist neuro. I DO like her. She did alot of blood work but none of the mg test..B12 and other stuff I did not recognize. She ordered the emg test but I've had that and it apparently is negative. I have the info onthe repetive test so I will take that with and now that myoverall health is getting so much worse (also Sjogrens) I'm not going to pull any punches or be afraid to say test me for MG. I have a copy of my last pulmonary tests to including confirmation about the 2 that I failed that require muscle. You see one the symptoms I been talking about for 3 year is that I can't sing like normal anymore. By now tho I can't really sing at all. I dont know why other doctors didnt get this as a big deal. But yeah for my pulmonologist he was the one that did the bicycle test that proves my proximal musclw weakness.
I'm so isolated at this point and in danger of losing my apartment cause of the stairs and possibly my job so I gotta get answers and treatment. Not to speak of how much my grand babies miss me!
So if anyone can suggest any thing I need to say or ask for when I see neuro please let me know over the nest few days. If you think it could be another muscle disorder I am not aware of I'm certainly open to that. I just want treatment for the right thing and a diagnosis so my kidds will believe me.
Over view of symptoms: choking when swallowing, swallow went up into nose once recently, cannot do stairs unless I use rail to pull myself up, tremor that affects head-neck 3-6 times a day, push my self out of chairs, pull myself out of car seat, difficult if impossible to do things above shoulders-hair washing/drying-shopping, worsening trouble thinking over last 3 years, very weak hands, droping things last few months.
Greatly appreciate any help you can offer.
Kathylee

Last Edited on 28-Jun-2008 7:38 PM

mrloz

51 post s
10-Jul-2008
2:30 AM 		Hi Kathylee, your swallowing and choking problems do seem to be very MG like symptoms and I also get that weird eyelid thing you mention. However I did have positive blood tests so I was easy to diagnose unlike many people here. You sound as though you have a sympathetic neuro so you should listen to her advice and if she suggests a course of steroids for example that might help to give you relief of your symptoms. Unfortunately there are other conditions that can mimic MG so you will have to be a patient patient.Good luck with your search for a diagnosis!
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Laurence in London
kathylee

11 post s
23-Jul-2008
5:17 PM 		Laurence,
Thank you. I guess now with the Myasthenic crisis coming on from a hot shower the day of my appintment causing and emergency admission and that the mestinon worked I'm closer to a diagnosis. The repetitive emg was normal and CT showed no tumor. Blood work takes weeks cause they send it to Mayo from my univesity hosp/clinic. The magnitude of the breathing problem was terifying.

Kathylee