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Senior Member
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Girl, you have had such a hard time! I don't even know what to say! Now you MAY have MG? What the hell? How can they not know? REALLY These are docs that make so much money every year and they can't diagnose you? You have a feeding tube, so obviously you are not faking it - why can't they figure it out? I was really getting worried about you and was so glad to see that you posted today.....I was telling my fmaily about you and how much you've been through, and that you can't seem to find a decent neuro, and how frustrated you must be by this point......My thoughts and prayers are with you daily ....Right before I was diagnosed, the "brilliant" ENT doc tested my swallow reflex and said it was fine - it was NOT fine - I was down about 20 lbs by that point, but they refused to believe me - it was so irritating. I am of the belief that if a woman complains of fatigue she is labeled "depressed" whereas a man gets a thorough work up - don't know why it just seems to be the case.......My doc took me down to 30 mg a day of prednisone a day and has added 1000 mg of cellcept to my daily meds - I'm still praying for remission. I've been housebound for a while now - record heat here in TX - so I am going CRAZY, but hope tp get up to Houston this weekend - wish me luck! Take care and let me know how you are!
Erin
Quote:
Originally Posted by eeyore2
Once a doctor told me that "opinions are like noses, everybody has one" This is certainly the case.
As my local neuro is useless, and I'm not expecting anything from Hopkins but a "consult" (last time when I was sent there for possible MS all I got was a letter saying probably not MS, maybe MG, we don't know...thank you for this referal), I found another "local" neurologist (actually in Bethesda MD, about 2 hours away, but I work up there and (should be) up there 3 days a week.
This new doctor actually seems quite competent (giving neurologists a good name again?)...he actually read the records I provided him and did a though exam. He thinks that the neurologist at Hopkins is wrong (although he would like to get the results of all the blood work they did and thinks I should follow up with the GI/swallowing and pulmonary consults there). He thinks that I do have MG, and possibly also an autoimmune peripheral neuropathy. He thinks that the Hopkins neurologist misinterpreted my temor for a positive "jaw reflex". Now of course he wants to repeat some of the EMG stuff that hasn't been done for years and said I may need a muscle biopsy (which Hopkins thinks will be needed also...which is one reason they want me off IVIG)
I don't know who is right---everyone wants to wait for everyone else to see me before they do anything. So far I'm stable, still pretty crappy, but stable. Hopefully by the end of September, when I see the new neuro again all the results will be in (I don't have a follow up appoint with the neuro at Hopkins...she said she would call me---I'm still waiting...
Meanwhile, I get my surgical J-tube (permanent feeding tube) scheduled for Monday...I'm not looking forward to that, but at least I won't have to worry about it cloging or pulling out as often as my G-J tube has.
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Erin
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