Thursday, June 19, 2008

The Rheumatologist, In Brief

The summary of today's visit with the rheumatologist: No change.

He says he is not willing to write off the parvovirus as a possible explanation for my ongoing illness. In fact, he says he won't consider diagnosing anything else unless I'm still sick in another year. Can I just say that didn't leave me feeling very enthusiastic.

He still considers lupus to be a possible diagnosis, but says there's no benefit to me to make that diagnosis right now. (Except that I'm considering applying for social security disability, and I understand it will be almost impossible for me receive benefits without an official diagnosis. Of course, the approval process takes 2-5 years with appeals so if I start now, I might have a diagnosis by the time I would get an appeals hearing. Or I'd be healthy.)

He commented that I appear to have a pale malar rash right now. It comes and goes. It's definitely not the dark mask I saw on a terminal lupus patient when I took that class on living with a chronic illness. But it's also not my normal coloring.

I currently have no visible swelling, but unfortunately that hasn't brought along a decrease in my pain levels.

Dr. Wernick said at some point, we might have to consider a diagnosis of fibromyalgia/chronic fatigue syndrome (which he considers the same disease, but the research I've done suggests otherwise). However, he agreed with my internist's opinion that the FM/CFS diagnosis should only be given when there is no objective evidence of any other diagnosis, which is not the case in my situation.

I have:
  • an elevated SED rate (which fibromyalgia does not cause);
  • I have a positive ANA, indicating an autoimmune disease;
  • and I tested positive for anti-Cardiolipin somethingorother, which is often seen in lupus patients.
There's something else I tested positive for too that I can't remember off the top of my head ...

The rheumatologist admonished me for using ibuprofin frequently lately because of my history of peptic ulcers. He said I should stick to Percoset if regular Tylenol isn't helpful. I've been having frequent headaches the past month or so that the Percoset doesn't touch but 800 mg of ibuprofin really tackles.

At the end, he said that essentially there's nothing more to be done for the meantime. I didn't tolerate the Salsalate or the Plaquenil, and he doesn't see a reason to turn to the next level of Lupus/RA drugs which can cause their own set of problems. He told me that right now, I just need to continue taking pain meds as necessary to treat my symptoms, and to come back in September.

He did order a urinalysis just to make sure that, if it is lupus, my kidneys aren't involved. He says I need to have those every three months until/unless they can rule out lupus.

He also said he would call my internist to tell her to keep me on the megadose of Vitamin D (50,000 IU once a week) for at least three months. I had been scheduled to take my fourth and final dose tomorrow. I wasn't too happy about that because I'm convinced the megadose of Vitamin D is the cause of my headaches.

Oh, and he said there was no way that my tethered spinal cord was causing the joint pain in my extremities and said the surgery would not be my miracle cure that the neurosurgeon got my hopes up about.

Next up: I see my internist tomorrow. I don't expect any major new developments. It's just my monthly check in.

I also return to the immunologist on Wednesday for allergy testing of the pneumonia vaccine. I'll be stopping my allergy medicine on Saturday for the testing, and expect to be cranky and stuffed up/sneezy/etc. for five days until I can resume it. I hope it won't make it even harder to sleep at night.

1 comment:

SharonMV said...

Hi Aviva,

No, I wouldn't want a dx of CFS/fibro, unless it was in addition to your primary dx. Maybe he'll be willing to give you a dx of parvo when you apply for SS or even a dx of UCTD.

I see by your previous entry that you got some results back from the immunologist. It looks like he is doing all the right tests & being very thorough. It's good to know about the low IGA. As the dr said, some people with this have no problems, but others do get more frequent infections. So prompt treatment at the first sign of infection is important. In some cases of very frequent infections, people take a prophylactic antibiotic daily.
It's good news that your IGG levels are normal, but checking up on how well your antibodies are working with the vaccine tests is important. I'm sorry that your allergies are complicating things. When I had the pneumovax challenge, I failed in all 14 strains they tested. So my immune system does not protect me from a whole class of bacteria. I think when people have normal IGG, but still have problems with function (fail vaccine challenges), it's called specific antibody deficiency. And this does sometimes require treatment.

I know it's just a part of the puzzle, but I have found that the immune deficiency problems & the autoimmune diseases really affect each other. Also, having a PID (primary immune deficiency) actually makes you more prone to developing autoimmune problems. I think this holds true for just IGA deficiency too, but I'll check on that.
Hope you are surviving without your allergy meds (would hate to go without mine) & good luck on the test.