I haven’t been posting much here because I’ve pretty much been immersed in research since my March 1st diagnosis of multiple sclerosis. I haven’t wanted to turn this into my-MS-blog… Though I have been thinking about putting up a separate blog in order to catalog all the stuff I’ve read. On top of that, there hasn’t been much positive stuff going on what with the Virginia Tech murders and the sad state of the planet underscored by every Earth Day piece in the media I’ve encountered since last Friday.
The amount of paper I’ve accumulated by printing scientific studies and various web pages was so large it had to be organized into a three-ring binder. As of now, based on everything I’ve learned and my inherent distrust of authority (including the mainstream medical establishment) I’ve decided that I’m going to manage my disease with an ms-specific diet, supplements, exercise and a generic drug called Naltrexone.
The day Mel and I went to the neurologist’s office almost a month ago, we arrived about 1:15 for a 1:30 appointment. I was informed that my appointment was actually at 2:30 (it really wasn’t, there’s no way I’d made that mistake) but that I’d canceled it. What?!? No worries, they’d get me in. We waited for about half an hour and then they put us in an exam room where we waited another hour. The doctor walked by a number of times and then finally stuck his head in and said that he needed to see someone else first because I wasn’t expected. He was nice about it and I said we didn’t mind the wait.
When we did finally see him, the doctor reconfirmed my diagnosis and offered DMDs (disease modifying drugs). The drugs are taken by weekly or daily injection, depending on which one you choose. Though the doctor said I could take some time to think about it, Mel and I looked at each other and said “the Copaxone seems good” and I agreed then to try it. Big mistake, more about that later.
Answers to questions we asked this guy – an ms specialist – about diet, over-the-counter medications that state they shouldn’t be taken by those with MS, and bee venom therapy (something we’d read about) were perfunctorily dismissive. The nurse who came in the room afterwards to enroll me in the drug plan and discuss the daily injections asked us several times during the conversation “Did the doctor mention that to you?” After we said no for the third time she offered an excuse to the effect that she thought the doctor wasn’t feeling well himself and he was trying to wrap up to leave for his holiday vacation. It was nearly 4:00 PM on the Friday before Passover.
Altogether, not a great experience and my impression of the doctor was that he is a bit of a hot shot. He’s probably about 10 years younger than me and though he was nice, he was a bit too brusque and blunt. The more I’ve thought about how the day played out, the less I like him. But, I have decided to see him once more before making a decision to find someone else.
To be continued…