Saw the neurologist yesterday. I like her, she’s tough, gave me a hard time about taking better care of myself, and less know-it-all than the other neuro I saw. He made it seem like he thought my diagnosis was wrong, that maybe my previous doctor was a quack. I guess I shouldn’t take that wrong. After all, there are plenty of quacks out there and they don’t know me well enough to know whether I knew a quack if I saw one. But Dr. L’s demeanor was candid, stern, and didn’t question my previous care as strongly.
Dr. L was also patient, informative, and took quite a lot of time with me, for which I am grateful. She also told me things about my health that no one had previously revealed. I don’t know if that’s a good thing. She mentioned though that according to the report on my last MRI, which I had provided, I have some disease damage to my eyes. Sort of shocking to hear that. I’d read the report (not that I understood it) and didn’t know it said anything about my vision. She said she will authorize some tests to look at possible progression. She’s also ordering an MRI, some blood work and some nerve conductivity tests. I go see her in two weeks, unless I don’t continue to improve as I have been since Wednesday.
We talked about why I stopped taking Copaxone (a daily injection), and how I am likely in relapse now because of that. I told her that was sort of what my last neuro said about quitting Copaxone. I told her I would try one of the new drugs if I relapsed, so looks like I’ll be adding another drug to my pharmacopeia. I’ll have to consider the co-pay I’ll have in the decision.
I looked up my cost on these drugs. It’s taken me 24 hours to process: Minimum $2000 per month. Criminal. Especially since I cannot get the pharmacy-offered discount since I am on Medicare. The thing is Medicare doesn’t provide drug coverage any more. I’m paying for that insurance out of pocket. Maybe that means I’ll get the discount, but I’m thinking not.
Mini Rant: I thought a lot of the drug research was already subsidized by the government, and then they want to make a billion dollar profit off sick people! There is now a cure for Hep C. A real miracle cure. The cost of 3 months treatment? $90,000! That’s $1000 per pill! Needless to say, millions of people with HepC are being turned down by their insurance companies (Husband among them). The excuse? Not sick enough. My husband personally knows/knew 7 people who have/had this. Three are dead, and a fourth nearly died more than once trying to treat the disease. It can turn nasty very quickly and once the liver is damaged, well it’s not like it’s self-healing. Why are these people even bothering to develop new drugs? Who is supposed to benefit? Sick people or Big Pharma? You’d think they’d make it a little more affordable, since frequent flares are really costly to treat. Not to mention the damage flares inflict on a person’s CNS, leading to disability. Can a corporation care about all the lives lost to untreated cancers or liver damage.
As for me, I’ll let the neuro know my decision and why when I see her in two weeks. I don’t think I’ll be too badly off, but it could be the Copaxone was keeping my relapses down to zero. The first two years after my diagnosis I had many courses of steroids and other treatment, for my symptoms. It is what it is and I’ll hope for the best. Who knows, maybe more research will show me some way to afford this. The saddest part though, is I know there are so many people sick and unable to afford any therapy at all. Like I said. Criminal.