Hi - thanks for the words. that was exactly one of my questions to him...if i don't have MG that would make sense, but what about a CMS. how does he explain the muscle biopsy that states over population of my nuromusclar junctions and that the analyst believes it supports a congenital myasthenic syndrome. and this is what he said...get this..." i know Dr. Bla bla and he's the kind of guys that if he's told it has to be something then he tries to make it fit in the box. he was just trying to be nice...what he saw could be normal for a woman your age."

==btw let me state my age is 33. i look like maybe i'm 25. infact i'm gonna post a picture from a good day, so you can see how "old" i look...lol...see below. u can still tell a little bit that my left eye is smaller/droppy compared with my right; but i try to over compensate by tilting my head and putting my right side towards the camera==

i almost lost it at that point i felt so shut down and couldn't believe he would talk down his own collegue like that...i mean really does he think this analyst spent his life getting his phd specializing in neuromuscular pathology and then spending the entirity of his working life gives "drive thru" results. hi Dr. bla bla i'd like to order a side of MG, can you make that work...WTF...that doctor was so arrogant I don't even know how there was any space in the rest of that room with his big head. so he said, i am going to request to see the biopsy myself and will let you know what i think!

please as of today, i am feeling much better about the situation and i don't care what he thinks. he's full of himself and has no regard for the practice of medicine or patience.

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I know exactly what you're talking about my family has similar genetics we look younger and oddly enough we still look "healthy" when we're sick. my mom had breast cancer and was going through chemo and everything and people were complementing her on how good she looked-and she did, she always had a smile on her face and was positively glowing (she's in remission). my grandfather went in for a heart transplant...a heart transplant mind you...and when he came out he looked like a greek good...there was no sign of weakness or that his body underwent a major surgery. it's remarkable.

i made an appointment with my therapist yesterday afternoon to talk with her and she has the same perspective as all of us have here. her and my psychiatrist are going to document my "emotional status" and have it added to my neurologists file, so we don't keep running into the lazy dr.'s answer of depression. i even asked her: do i have major depression and don't know it? like is that possible? she explained to me that i do not meet or present any of the clinical symptoms of major depression. i have suffered from major depression my entire life until about 30, so i think i can recognize when i'm not depressed. so i was glad to hear i am on track with the understanding of myself...lol...and am very glad they are going to provide documentation to my neurologist.

i know right, that was the worst part!

the dr basically said he didn't have faith in that persons analysis of the muscle and wanted to look at himself.

i'm 33.

oh and one other thing that doesn't make sense to me and i'm going to talk to my neurologist on the 25th about...if i don't have any form of MG or CMS then why is that i take 180mg of Mestinon and have no side effects. if i didn't have something going on (i.e. i was "just" depressed) then i would be so ill from the medication it would rediculous.

nothing adds up from that doctors diagnosis. i can honestly say that i am oopen to the possiblity that i don't have MG, that would be wonderful, but if that's they case then i want him to prove it to me. which of course he can't cuz he's talking out of his buns. so i'll move on...neeeexxxxttt!

You are stealing a page from my life story. You even have the same doctor's line, well one of them. Plus, you are writing my lines.

With that said, I have had three doctors say I have MG, and I have two doctors saying I do not; that just proves to you that medicine is an art, not a science, when it comes to MG.


Never can I get one of the naysayers to give me an answer to what I have. They will refill my Mestinon, monitor my enlarge thymus, but they will not SAY I have MG, even though one of the naysayer diagnosed me as having MG on my medical record. Doesn't make sense, I know.

That's okay. I really don't care about a diagnosis of MG, since the Mestinon is somewhat working for me. What I really want to know is whether or not I should have my thymus removed. If you start talking about that, the doctors start talking in circles. It's amazing.

Well, in March I will go to the MG clinic, and I will see if I can get an unbiased opinion.

By the way, Mvoyvich you appear to live in California. You can go to the MG clinic in Long Beach to get evaluated for free, but you'll need your medical records. Otherwise, you have to come back with them or pay to have them do the testing.

I will be interested in hearing how the neuros handle the support from your therapist/shrinks. I am in a bind in that area or I would have done that. My former therapist is retired and the shrink who knew me well has this odd postion about not going back in on my case.

My current chronic illness thereapist knows him somewhat and I asked if this was reasonable and he said it is just the way he is. It was kind of a 'too close' relationship with this shrink. A fellow shrink went to trial for a death here in town and he had his own nervous breakdown and spent more time telling me about his feelings! So many patients so few good docs!

Annie59