Ok, as previously mentioned, I did go in to see the 'neurology people'. Back in late April. I do qualify for Tysabri, it looks like. I'm going in for MRI's of the brain and spine next week. The next week I'll go back in, they'll look at the films and we'll get the process started with the insurance company. Although, that will have to wait for July 1 as I switched my insurance company this month during open enrollment. The new company will cover the drug, which is good because it is so expensive ($25k per year). So, I think, some time this summer I'll give Tysabri a try.
While I was there, she gave me a referral for a pulmonary doctor to check on my recurrent bronchial infections and pleurisy. I have the feeling that nothing will come of that. I continue to have chest pain and lung pain, but it seems like it is pretty hard to pin down a cause. However, I'm going to go in and get checked out. It's my normal MO to not do that. But I am using this summer to catch up on hopefully all my blown-off medical shit. There's a bunch of it. I just need to psyche myself up to tolerate all the ambiguity, and taking the chance that they'll tell me they have no idea what I'm talking about.
I have a hypothesis that there are two things going on. One is a lung thing but the other is something like caffeine-induced heartburn. I've always known that I was living on borrowed time as far as caffeine is concerned. I've gone off it for nearly a year at a time, but always end up going back, blaming the demands of my job and life in general. I function better on caffeine, dammit. Why this would start at about the same time as the pleurisy would seem to be unrelated. Kind of weird, though.
Another variable is that she also gave me a single-dose antibiotic (Bactrim) to take after sex to prevent bladder infections. Could that be related? I took the first one on 4/16. That was about a week after the pleurisy diagnosis. I've probably taken 4 doses.
So, I need to come up with a plan to test whether the chest pain stops if I go off of or reduce the caffeine. Ideas:
1) Switch to tea only and see if it helps (as opposed to diet Pepsi).
2) Consider Provigil again (drug prescribed to MS patients for low energy)
3) Give Ritalin another try (Ritalin is prescribed for MS patients to counteract cognitive thinking problems due to MS.
4) Stop the Bactrim for a few weeks. I just read about some really wacky side effects of it, and they include chest pain. Wouldn't it be kind of great if that's what it was? I think I can rely on my d-mannose supplement to manage my bladder infections.
I'm honestly afraid that life without caffeine would be impossible to actually live.
I'm thinking of starting with #1 and #4. Definitely starting with #4.
This is why I am usually not a fan of drugs and medications. It's hard to figure things out when you are on more than one at a time.
I just watched a recent Frontline episode about ALS. What a horrible disease. There are many things worse than MS and life without caffeine. The brothers and their friends were just amazing at what they did to try and solve the problem of the disease. Amazing.