No real news from the visit to the internist yesterday.
She thinks my chest pain is caused by inflammation in the joint between the sternum and the chest wall. This, she says, is consistent with both the parvovirus theory and the connective-tissue autoimmune theory.
(She explains it by saying that the parvovirus made me sick initially but for some reason caused an autoimmune response, which is why I'm still ill. It's uncommon, but has been documented in the past. Apparently, something similar can happen with strep throat, which can morph into an autoimmune disease that causes severe joint pain. Who knew?)
She did an EKG, which was similar to my past ones except she could tell from the print out that I was shaking during it. I suspect that was mostly from my lack of sleep the night before, but I do shake more when I'm in a lot of pain for some reason. The neurologist I saw said it was most likely an essential tremor.
She also ordered a chest x-ray. Unfortunately, the radiologist was otherwise occupied, so she said it was inconclusive whether I have fluid in that joint area in my chest, which would explain why the pain is so severe.
She put me back on the higher dosage of Prednisone (60 mg/day) because in theory that will reduce the inflammation and make my chest hurt less. We'll see. She did not agree with my theory that the Prednisone was the cause of the chest pain, but she did acknowledge that my body just doesn't react well to steroids in general.
She told me that another patient of hers who has a similar chest pain gets shots of cortisone into her chest, but I said I really wasn't interested in going that route because I've had so many cortisone injections previously in other areas of my body and I've never gotten any good results from them. She had no problem with my decision there.
So, essentially, she just gave me more and stronger narcotics to hopefully get me through this. When I was home from the hospital, I was on one Percoset every 4-6 hours as needed. Unfortunately, after a couple months of that, I started having an allergic reaction and itching uncontrollably so we changed meds. Eventually, I ended up on Dilaudid, 4 mg every 4 hours as needed. The Dilaudid was helpful with most of my joint pain, but it really doesn't even begin to touch the chest pain.
So now, when the chest pain is really bad, I'm supposed to take two to three Percosets every four to six hours. The hope is that the chest pain will lessen, and I'll be able to cut back to either just a single Percoset or the Dilaudid.
And I guess now I just wait for my Jan. 8 appointment with the new rheumatologist. And hope that my blood sugar stays under reasonable control without needing medication.
I also had a bunch of blood drawn for yet more tests. I had read that the parvo titre should be taken at least twice to be able to tell if it is an active infection or not and whether or not it's getting better. She also decided to do the strep titre on me because, hey, it's one thing we haven't tested yet and it also could explain my symptoms possibly. And then the usual stuff, like SED rate, blood counts, etc., just to make sure nothing is changing in a bad way there. We expect my SED rate to be lower because it does respond to the Prednisone (although I don't understand why I don't experience less pain when the SED rate goes down ... but maybe it's less than it would be without it. I certainly don't know.
And after a week on the Prednisone, the lovely drug-induced chipmunk cheeks are definitely back. Oh, joy.
Whew! - This has been me all summer :-/ *Thank God for air conditioning! *
1 month ago