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Old 10-21-2011, 12:41 PM #11
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Quote:
Originally Posted by Nightcrawler View Post
Confused,
Strangely you sound a very lot like me. I had a father and aunt with MG. My father was diagnosed by the neuro ophthalmologist (often our heroes), but went untreated for two years. He developed severe problems like his sister who died at 42, untreated. He died at 87, diagnosed at age 80. He was never treated aggressively and I don't know why. I saw his doctor because I thought he would have learned his lesson with our family and he ias a well respected expert in the field of MG. Both Dad and I are extremely strong especially for our ages. That doesn't mean that we are not also extremely weak at times and cannot do what we should be able to do given our basic strength, including breathing swallowing and walking. I was reluctantly given pyridostigmine and a rather wishy washy diagnosis of myasthenia. It is now a year later and you will be glad to hear that there is a doctor I saw this week at Vanderbilt who congratulated me on being the strongest patient in his clinic, said he was sorry for the weeds (I am an avid gardener) had no problem with accepting the diagnosis of myasthenia, and explained that since I was not planning on having any more children (I am 65) and my daughters are not, that testing for congenital disorder without more clinical direction would not be very profitable and that he thought it was autoimmune, and response to medication might be the easiest way to differentiate the two. I have had symptoms of this disease going back at least forty years and have been actively seeking a diagnosis for thirty five (off and on). The progression has been slow, but constant. Don't accept arrogance. I was told by Dad's doctor "myasthenia or nothing.". He was willing to go with nothing, but I was not. By the way his SFEMG which he interpreted as a borderline, the doctor I saw yesterday said was definitely abnormal and abnormal like myasthenia. I didn't even have to undergo the studies again. I have had the sleep, MRIs, blood sent to Mayo for antibodies, EMG all normal SFEMG reported initially as borderline abnormalities, but consistent and fluctuating eye findings and getting anxious before studies tended to make my clinical findings much better. I hope that is encouraging, not that any of us want to have this disease, but if we do, it is helpful to have a diagnosis so we can be treated.
Yaaay for clinicians that are physicians. nc
Hi Nightcrawler,

Wow, that is so interesting. I think my dr refused treatment because he lost all faith in dr.s as he progressively lost weight and his drs were strangely unconcerned. I even read a report where they called him difficult because he refused a swallow study because he could no longer drink the barium.

Interesting about the wavy tongue. I have that too. Sometimes I can't whistle either. But I also have oral psoriasis so I always figured that was the cause of those things.

Who knows.

My primary care doctor has referred me to a neuro-ophthalmologist. I love my pcp. She is always very thorough. When you are having weird symptoms and feeling really poorly it makes sense to check things out.

Thanks again for sharing experiences.
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Old 10-21-2011, 12:50 PM #12
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I'm so glad you're going to see a neuro-ophthalmologist! Hooray! I have high hopes that he or she can help figure this out.

Abby
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Old 10-21-2011, 05:06 PM #13
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Wow that is great my neuro-ophthalmologist gave me my first DX when my blood panels were negative. He said he didn't care about the blood work but said it would be positive within 12 months and 4 months later it was positive.
Good Luck
Mike
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Old 10-22-2011, 05:24 AM #14
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Just a thought. what if your blood work didn't turn positive? would it make him doubt this diagnosis. where did he take those numbers from? Doesn't he know that 50%-80% of patients with MG do not have detectable antibodies?
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Old 10-22-2011, 06:34 AM #15
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Now I'm not sure how he came to his conclusion but I will say he was the most confident doctor I have seen thus far. They examined me eyes for about 2 1/2 hours. It was the most through eye exam I have ever had.
Mike
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Old 10-22-2011, 07:18 AM #16
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After lots of negative bloodwork and two inconclusive SFEMGs, I was also diagnosed by a neurologist who specializes in ophthalmology. He did a stimulated SFEMG on my face, around my eyes. The weird thing about that is that I have hardly any eye-related symptoms. I sometimes feel a bit of strain in my left eye--that's all. So when he tested the muscles around my right eye, I didn't feel very hopeful! Imagine my surprise when he said the results were conclusive before he even did all the tabulation or calculation, or whatever it is they do to the numbers.

I sometimes doubt my diagnoses, since my symptoms are so atypical (though the longer I have this disease, the more typical they seem to get). Also, Mestinon doesn't seem to help me. But my dramatic response to my second course of IVIG reassures me at least that my disease is an autoimmune disease--and therefore Imuran is a reasonable treatment to try.

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