I want to thank you for welcoming me and confirming what I thought about the telephone call from the internist. Lynn, that is exactly what I asked him, "are you crazy? That is the most rediculous thing I have heard yet about smoking" My hospital aquired MRSA with the adrenalectomy was blamed on smoking. I later found out insurance companies will no longer pay for the treatment of it, the hospital caused it so must foot the bill. They actually booted me out with the surgical site oosing puss then readmitted me 2 days later for iv antibiotics. It took 2 days because no one would return my calls, so I called the hospitals main complaint phone number.
Anyway, I told him I had no interest in helping him further his education and hung up on him. My ENT surgeon suggested an MS specialist at UPMC, I called but could not see him for 6 months, so I settled for another internist who saw me twice and left for greener pastures, but I will see the specialist in 2 weeks. The internist said she did not think the lesion look typical for MS and wanted to rule out many other things first. She had me see a motion disorder neurologist for the tremor (klonopin) and an opthoneurologist for the double vision (?th nerve paulsy, suggest I were contacts at the same time as glasses-no thanks), and a neurosurgeon. Finally an MRI of cervical spine. He said I have 3 deteriorated discs causing some of my symptoms, need to take out 3 & fuse 4, spinal stenosis. OK. After surgery I find he took out one & fused 2 with a plate that messes with future MRI's. Physicians Assistant said my bone quality was so bad it would not hold more hardware. Surgeon denied this. One more MRI & xray confirmed crooked plate and something "consistent with muscle spasms" and he said I no longer need to see him. What?
I also had a nerve conduction test on one arm & one leg. Liked to kill me the spasms hurt so bad. Everything normal. Had blood tests for MG, all except the newer musk test. Normal. Also had all the other rule out blood tests, B12, Lupus, iron, copper, Lyme, ANA, titre, TSH, T3, T4, etc. All normal. On my second appointment with the internist at UPMC MS clinic she asked me if I had the results of these test (duh) as their staff takes months to forward incoming test, they are sitting in a pile on someones desk. She then informed me she is leaving the practice & next I will see Dr. Mitchell, who I was referred to anyway. All of this has taken about 6 or 8 months, can't remember, but I am sick of all of them.
The only change in my condition in the past year was when I started on the Hydrocortisone for AI, head slowly stopped spinning as it accumulated in system. Dosage got adjusted upwards a few times. Then I learned from an addisons group that some folks need to take 2/3 of their dossage in the am. I tried it and after a few weeks I can finally spend a few hours a day out of bed and am starting to get some motivation back, just enough to think about what I want to do. If I go out of the house I am back in bed all day for days, lethargy.
Oh, I forgot, after being so frustrated with the docs before the Hydrocortisone & Brain MRI, I used to get so angry with them that I would cry in their offices. They would say I need antidepressants and have fibromyalgia (no trigger point reactions at all) and some non specific autoimmune situation (what?). I figured I would humor them with the antidepressants just to get further in diagnosis, no difference. But the Hydro gradually helped with the anger and constant crying, now I only cry when I do to much & Hydro is too low & dehydrated.
I am looking forward to being a part of a community where I am understood and not judged for my limitations. From what I can tell from other posts I know I can learn a lot here and finally be able to sort through my symptoms, figure what is the Adrenal Insufficiency & what is possibly MS related. Thank you again for welcoming me.