Quote:
Originally Posted by kumar
I am having voice problem( ENT told : muscle tension dysphonia) , blurred vission ( left eye only - at times I feel my eye is very heavy) and neck muscle tightness and weakness in my right arm and leg and generalized fatigue. I am getting neck muscle tightness when I expose to cold , hot, long walk , etc. ( unable to cook , unable to do normal house work, )
At times I am able to talk with reasonable quality voice, but I have to put extra effort to get the voice out
But the MRI was normal, EMG was normal, s ingle fibre studies are normal and CT scan was normal . Therefore the conclusion was no MG.
Neck X-Ray: loss of the normal cervical lordosis
I have hypothyrodism and Vitiligo.
I have elevated Acetylcholine receptor antibody ( 0.53nmol). Reflexes are absent in the lower limb.At times my neck is sticking out due to muscle tightness. If I force the muscle to release, it getting worst. If I let it loose, I am getting relief slowly. I am so puzzeld with out having a dignosis for the symptoms. One docotor said to me all these things due to stress, but other one said could be some neurological issue.
I am puzzeled. sick and tired of seeing doctors
Any advice or help would be greatly appreciated!!
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I am no doctor, but from my personal experience I absolutely do not agree that you do not have MG. I myself have defied the EMG, and Single Fiber EMG and the only thing I have is an elevated Acetylcholine receptor antibody (0.46). My doctor worked at the Mayo Clinic and worked with Dr. Lambert (Lambert-Eaton Syndrome) and told me that he has seen cases like mine. I started with an ENT as well since I had problems with my throat and swallowing. Then slurred speech that no one else seemed to notice that much. I went through that for 1 year before the third neuro took my symptoms into account and tested me for MG. I tested twice for this at two different labs to be safe. I went to Mayo for the single-fiber EMG and to the Cleveland Clinic in Miami to get a second opinion. They all agreed that this was the correct diagnoses but the Mayo wasn't sold because I didn't get weak quick enough. Well that was 4 months ago and now I am a lot weaker. I just started having so vision issues a couple of days ago. I just want to let you know that it sound like it may be only presenting bulbar symptoms at this time. My doctor is satisfied with this diagnoses as I was because I was tired of doctors telling me it was in my head and it was anxiety. I saw around 15 doctors before I found an answer. Through persistence I found an answer to the problem. You know your body better then any doctor. Just find the right one who is willing to take you serious. Good Luck and I hope this helps.
-Eddie 22 Male
DX October 2008
symptoms started Sept 2007