Hi, Linda,
Thank you so much for taking the time to write such a thoughtful, articulate response to my post. Your comments and obversations were inordinately helpful.
First of all, I have to tell you how very sorry I am about the suffering -- both physical and psychological -- that you have endured over the last few years. Your courage and resiliency are an inspiration.
I, too, have been derided in my efforts to find out why I was so sick, tired, and in so much pain for some 15 years now. My many visits to specialists were labeled "doctor-shopping", and the only condition that my friends and family members could agree upon was "hypochondria". I am certain that the doctors I saw agreed with them, but most of them were more subtle about it, telling me that I just needed to "exercise", "get a job", and "'get over' my depression" (I was indeed depressed, and am still taking antidepressants). One neurologist, however, told me, as he walked into the exam room, reading over my new-patient medical history form,
before even looking at me, that he usually advised patients "who present with so many complaints that they should see a psychiatrist."
Even now, there are those who question just how much the hypoT and the MG are causing my symptoms, and how much is due to, well,
me. My endo thinks that as long as my TSH and T4 and T3 values are "normal", then I am "fine". But this is the winner: Despite a positive SFEMG, my neuromuscular specialist doesn't think that my muscle fatigue and weakness
are caused by MG. I have been suffering from chronic double vision for two years, so he is willing to "grant" me a dx of ocular-only MG, but he does not yet believe that I have generalized MG, because his clinical exam of me at my first appt. (in the a.m.) was "normal" with respect to muscle strength.
"Normal"??? I can't even
take a shower every day any more, never mind doing any cooking, cleaning, or shopping. He seemed to think that because I could get out of a chair without using my arms (at that one appt., which, as I said, was in the morning) and was able to climb some stairs down the hall (which I often
can't do), I could not
possibly have generalized MG.
Do even the most severely disabled MGers just wake up one day, or week, or month and find themselves
completely incapacitated? Isn't it a fairly gradual process? Isn't it possible that I have what might be clinically called a "mild" case of MG, but it is still generalized?
The n/m guy must have "gotten to" my endo, because when I saw the endo about ten days ago
he started questioning the extent to which my muscle weakness was truly caused by MG. He ordered blood work to rule out myositis, which I don't think I have. I really think it is MG, complicated by hypoT and fibromyalgia.
Does it make any sense to you that when I got the positive SFEMG result, I actually felt "happy"?? Finally, after all those years, I had a diagnosis that was "legitimate" in the eyes of everyone (hypoT and fibro were not deemed to be so), and now even that is being questioned by the so-called "experts"?? I don't think I even have to ask you if you understand how frustrated I feel right now.
This is such a coincidence, Linda, but we are just about the same age (I'll be 49 in August). I wonder if our age and gender are why we have not been taken seriously by so many doctors in recent years.....
Speaking of age, I went into menopause at 46, almost three years ago. I was dx'ed with osteo
porosis, not "-penia", at the same age. My endo did say something interesting to me at my recent visit. He believes that my relatively early menopause was due to an autoimmune reaction against my ovaries. Apparently, some research is being conducted right now to look into possible a/u disorders affecting the ovaries.
At any rate, returning to my original question in my original post, I truly appreciate your sharing your own journey with me. Thank you for understanding my frustration and for your excellent advice. It never would have occurred to me to e-mail the heads of Immunology at my area teaching hospitals, before wasting their time and mine in making appts. to see them.
The big question is "Should I tell Drs. N/M and Endo first?"
I can't believe that you're just now having a lupus work-up, having been so sick for so long, and having such a high ANA (my highest was only 1:320, and I've been tested probably a dozen times over the years for lupus).
And what conclusions were drawn about your abnormal MRI? With the presence of the white lesions, I would have thought that MS would be a likely dx. (Have you had any EMG studies yet, or will they be part of your MG work-up?) But what do I know? I have MG, but I really
don't have MG!!
Along with everything else, it's all in my head....
You sound so sick and so desperate, Linda, and I wish there were something I could do to help you. As horrible as I feel, I am not in nearly the same shape that you are.
I do wish you tons of luck at your appt. with the immunologist and with your pending and upcoming lupus, MCD and MG work-ups. You will have your answers soon, and, yes, you will live a long, happy, and productive life!!
When you feel down and become convinced that such a future is not meant to be, please know that Pat in NJ is cheering you on and praying for you.
If you don't mind and are up to it, please keep me posted. I will be thinking of you often.
With warm wishes,
Pat
P.S Belated Happy 50th Birthday wishes!
P.P.S. Have you considered exercising?!?!?!
Should I see an immunologist, and how do I find one? 
Thank you, Linda. You are a doll! 
or the hypochrondriac diagnosis... ha.. I am a thinker by nature and ramble a lot sometimes so never know how folks are going to take me...!
Linear Mode
