Thank you all so much for the wonderful sentiments. I was going to write up the visit tomorrow, but when I saw Rose had started a good luck thread I had to answer.
The rheumatologist was a very pleasant and informative person. He carefully went through my file with me there and explained each note as he jotted something down. He said he felt the bloodwork pointed away from an autoimmune disorder (no rogue antibodies other than the pernicious anemia). He also said it was unlikely to be polymyositis due to my normal CK level.
After the clinical evaluation he said it was unlikely to be fibro as none of the areas he tested were really painful to the touch (I never really suspected that anyway as I've never really had much neuropathic pain, just soreness). He examined all of the major joints and said there wasn't any significant inflammation or pain.
In the end he, "If you had come to me first I would have suspected metabolic myopathy and sent you to a neuromuscular specialist." He agreed that the muscle biopsy was a reasonable next step, and that there might be some answers there. We talked a bit about where I was at, and he said that if he had to call it today he would leave it at "unclassified myalgia" from purely the differential diagnosis perspective, but he didn't really think a diagnosed was appropriate at this point.
We talked about fears of NMD and he and I both agreed that the EMG should provide some comfort in that regard, and the biopsy even more. So one day and a couple hundred dollars later, I have a concurrence that a muscle biopsy is as good idea, but only a handful of possibilities crossed off my list.
My only frustration (other than still being in limbo) is that the rheum, like the U of U specialist, shrugged his shoulders at the dysphagia. He recommended I see an ENT.
Positives of the trip: I had a nice lunch with my wife (Billings after all is one of the "big cities" in my region), listened to some good music, and joked about a business we saw named "Sagebrush Meats." To me that invokes thoughts of such delicacies as roast prarie dog and braised jackelope.
Again thank you for all the well wishes. You're part of what makes this forum such a great place.
"Sagebrush Meats!" It does create the image of the wilder side of possibilities! ... I didn't realize you were going all the way to Billings.
No surprises that you didn't learn a whole lot, but its good that you've already got the muscle biopsy scheduled as its next on the adgenda.
Do you have an endocrinologist in mind? What did the neuro you saw out at the University say about the metabolic angle?
I think you've been at this long enough to not have had your hopes too high as far as expecting immediate answers. Just try to prepare yourself for the muscle biopsy manybe not being conclusive either. Hopefully this won't be the case, but its still best for the psyche to go in with the attitude of it being just another step in the process.
let us hear from you when you're able after the biopsy, and good luck!
well, kinda sounds exactly like my rhuemy vist. (all of them). I did test + for an arthritis gene. He does not think that its related to this at all. I hope your biopsy helps, but be prepared it might not. Mine was not much help at all. It did have atrophic fiber but neuro said from disuse....I am going to get copies of it all ( I said I wasnt but I am) and go to a new mda/als clinic instead of the university. I saw an ent and it wasnt much help either. Just told it was LPR. I understand how you feel, and I hope that your muscle biopsy is more informative! We seem to be on a similar journey, but you are a better speller!
I go back and forth with just not going to the doctor at all or trying to figure it out? Some days it is nice to not know and have that hope. Other days I feel nervous because things seem to be getter wose inregards to muscle pain. Anyway, sorry, this thread is not about me.
I am glad you had a nice lunch with your wife, it is easy when no kids around! today is my 9th year anniversary and my hubby and I are going out to nice dinner and cigar bar. I look foward to spending the evening with him and not having the kids always interupt us!