Folks, any and all ideas very much appreciated.. I'm particularly interested in hearing the experiences of others and most notably how a Rhuematologist is supposed to respond.
About 1.5 years ago my troubles began: severe abdominal pain and hypnic jerks (***k myself awake repeatedly at the point of falling asleep). I ignored the abdominal pains since they came and went but couldn't ignore the inability to sleep - was started on Lunesta/etc and have been on it since. In retrospect, I wish I hadn't.. It would have forced me to be a bit more aggressive.
Given the sleep issues, I did consult an ENT and underwent a sleep study. Result was that everything was fine, no apnea or other obvious problems. The ENT did identify an anatomy problem and drilled a few holes in my maxillary sinuses. That was very uneventful.
Fast forward a few months later.. I was out of the country (somewhere in Asia) and one day woke up with the skin above my eyes severely burning, but nothing visibly wrong. The following day, the surface of my tongue fell off (literally was like it was all burned off). A local doctor there thought it was thrush or hand-foot-mouth. Precisely the day my tongue problems started, I became severely fatigued. I sleep about 15 hours per day (or want to).
Fast forward a bit more. Ongoing tongue problems, but my salivary glands all became swollen (like lots of balls under the skin). Presumably this is why my mouth began getting severely dry. A re-visit to the ENT and she couldn't answer why this was happening, but recommended I have another sleep study to look at these hypnic jerks. This time around, I have severe obstructive apnea. In a span of 4 months went from none to severe. I could really tell it had gotten bad quickly as I started choking myself aware. Average 600+ breathing stoppages for ~20 seconds each (that's a lot of not breathing!). Ok so I start using a CPAP machine but unfortunately it's no help with the sleepiness.
I've undergone tests for virtually every virus you can imagine but the only oddity on the list: Cytomegalovirus positive IGM but negative IGG. This was retested several times for months and no change. The infectious disease doctors, I had 2, gave up. About this time I develop what turns into chronic epididymitis. Doctors try me on all kinds of antibiotics as guesses (amox, sulfa drugs, azithromycin, doxycycline, cipro, levaquin, etc) - nothing helps.
Forward a little more. My knees and hands start hurting. I begin having muscle twitches everywhere. Heart palpitations and chest pains. At this point my 3rd primary doctor did a few rheumatology-area tests. Positive ANA (1:160, nucleolar pattern), positive Rheumatoid Factor (slightly, it was 25). This netted me a referral to a rheumatologist.
I've been seeing the rheumatologist for many months with increasing symptoms. Additional tests he's run (SSA, SSB, HLA B27, etc) are negative but obviously I'm having issues.
About 4 months ago, I began having neck pains and severe headaches at the base of my skull. I also started getting lost. Meaning I can't remember how to get from work to home without making wrong turns. Cant turn the right way getting off an elevator, etc. This time I receive a neurologist who performs an MRI then says all is fine. On the way out I ask for a copy of the report and see a few things that may or may not be issues but are interesting data points. It notes I have cervical spondylosis. Also an incompotent diaphragm sella that is leaking CSF (presume into the pituitary area?). Also in the report were the results of a Spinal tap I had done: only finding there was elevated protein in spinal fluid. So, I'm done with that doctor.
Shortly afterwards, my hearing becomes distorted. When I move my eyes, sounds are changed and I get dizzy - I must say this is worse than any pains.
About a month ago rigor-mortis sets in (not literally). Random muscles become very painful then progress to very sore. All symptoms above are in full force. Blood work this time shows high muscle enzymes and inflammation markers.
Two weeks ago one hand swells and spots about the size of a cookie raise and swell on my legs. Rheumatologist thought this was interesting and, based on the tests ordered, is looking for sarcoidosis (test C1Q Esterase, etc). At this same time I can barely walk because the muscles in my legs are burning like expletive.
So where I'm at: My Rheumatologist sees this, hears my complaints about progressively bad muscle and neurological problems, but keeps scheduling me for 2 month appointments to 'see how the tests look then', because this might 'just be an infection'. He did indicate that if we can't figure this out that 'down the road' we may see how steroids go. My view is this is unacceptable - If it's an infection I can't find anyone to help answer what kind (in prior doctors defense, we pretty much looked for everything they normally see). If it's not an infection, I think my rheumatologist is just waiting for me to have a stroke or something before he takes any action.
So the question: Are rheumatologists supposed to be this conservative in testing and treatment? An example: He wants to biopsy my salivary glands, so set an appointment for this to happen in a month. My fear is that in a few months I'll go back and he'll claim the inflammation isn't climbing per new bloodwork and schedule me to come back in a few months. At this point I need to get much better or much worse. The massive fatigue, neurological items and pain are very much impacting my work. Fortunately I have a very understanding employer, for now at least.
I've got copies of all lab work if anyone is interested in me posting.
Thanks and apologies for the length!