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Member
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Join Date: Dec 2006
Location: michigan
Posts: 290
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Member
Join Date: Dec 2006
Location: michigan
Posts: 290
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i hear ya
I was diagnoised with mg about 3 years ago, ocular. Tried Mestinon and had a problem with it. I was tested again and had a negative results. Do I have it or not I ask? Having to muscle testing showed me on the border. Now I have been told if you have it, you have it, and it is not curable. I have had a pletoria of physical malidies, mostly the endocrine system. I am to go to Mayo Clinic in Rocherster, Minn in January after about 6-7 years of slow but steady health decline. I am looking for answers also. Been to many specialists in many areas with no answers. I have even been referred to as a "medical nightmare". Three years ago I had the droopy eye and now I have an obital pseudo tumor that causes ptosis. I am 50 going on 90. I have been on high dose prednisone for the tumor for over 3 mouths with no change. Now they are thinking a pituitary tumore or cushing's. I just would like to know if i can have my life back or give me a death sentence because this is not a life. We have to be advocates of our own health, we are the one's that know how we feel. I would like my 40's back because I feel that I spent the majority of them declining like someone in their 80's.
Quote:
Originally Posted by Rach
Hello, This is my first time on this site, and I have looked at some postings and found them quite helpful. I see my neuro on Monday, and am ready to see what if anything, can be done. One reason I'm posting is to find out about anyone who has symptoms of mg but no positive tests to confirm. Or any other illnesses that are similar to mg but not mg - how to test. And any suggestions. I currently have supportive neuro and gp, and was diagnosed with sleep disorder last year - a severe case (PLMD - periodic limb movement disorder). Even with that treated, still muscle weakness.
I don't have a clear diagnosis of mg because of negative test results. Symptoms began with vision ten years ago, diagnosed probable mg by opthamologist, and neuro diagnosed mg based on mestinon response in 1998, and autoimmune thyroid disease. Scheduled thymectomy in 1999, but insurance dropped my doctor group so lost neuro & optho. Surgery cancelled. Found great new gp, but the neuros all thought nothing neuro wrong with me. Saw 4 neuros, and kept the 4th just cause it I was tired of trying to prove myself.
Anyway, always neg AchR, clear MRI (no MS which my aunt has), neg nerve conduction, neg SFEMG (but just off mestinon for a few hours). All this in 1999, 2000. Stopped mestinon after SFEMG - the ranges between strenghts and weakness too extreme, and adapted my life.
Stopped working 2 years ago, husband and I rent house since August with my mom, who has helped stabilize daily life by helping and/or doing cooking, laundry, shopping, etc. Even with help, I have limited stamina. Social Security disability turned down, on appeal.
But right now it's about - I have slowly but surely progressed, gotten worse over the ten years - so what should I do now? Immunosupressants without diagnosis, what tests. It's why I'm seeing neuro. Bottom line is - I'm frustrated and scared. I have run out of ways to adapt my life, and feel I need to do something - particularly medical.
Thanks, feel better just saying all this. Rach  |
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