Just when I thought I wouldn’t have any news…
I made a surprise visit to the neuro Tuesday morning. I’d called early Monday to report the blurry and double vision I’d been experiencing. Dr. O called back, said “Then it’s probably MS, we should consider drugs, do you want to come in?” His people would call my people to set it up.
They did call a little later and offered me a spot at 8:45 in the morning! Tuesday a.m. is his specially-reserved time for nerve studies, so it was an unusual and unnerving offering.
He did a quick exam of my eyes (follow my finger, look straight ahead into the bright light) and asked some questions about how I was seeing:
- How long has this been going on? (Within the last week.)
- Are images overlapping vertically or horizontally? (horizontally)
- Worse if I look left or right? (hadn’t noticed – I think it’s worst when I look down, but that could be just because it makes my eyes cross for real)
- Any headaches or pain? (nope)
- Did I want to do another pulse of IVSM? He noted that I hadn’t really sounded enthusiastic about it on the phone (Oh, did that come across?) and said it was up to me. It would likely resolve itself in a few weeks either way.
He did encourage me, though, to choose and start one of the DMDs – disease modifying drugs
. He gave me gigantic pharma-swag packets for Copaxone, Avonex, and Rebif.
He said Betaseron was falling out of favor, and offered no info on it. He also encouraged me to go online to read up on the options (webmd, mayo clinic, etc) and to call him with any questions. All I have to do when I’ve picked one is call – he said we could get it started over the phone.
He talked about several of his other patients and how they do on the drugs, so I didn’t have to ask if he had experience with the disease and its treatments. (It seemed a little too late to ask, anyway; besides, everything he’s done has been exactly what all the guidelines suggest.)
Kris, wary of the injections, asked if they really helped prevent relapses, and he answered yes. Nothing’s perfect, but his experience was that they could prevent flares and slow the development of disability over the long term. That’s what we’re hoping for. It’s a lot better than they could offer even 15 years ago, so the hope is that they’ll soon develop drugs that don’t require injections and some that are even more effective.
Dr. O also wants to do another brain MRI to see what’s going on inside and to make sure that the LP didn’t make my brain sink and pinch a nerve. He doesn’t think that’s what’s happening, but it’s an outside possibility. I feel like this guy gets thoroughness, even if it’s a little alarming at times. So, I’m going to shoot the tube next Tuesday morning, instead of in July.
He also sent me for more blood work to get a baseline of my liver function. He’ll monitor it while I’m on the DMD, since they can cause elevated liver enzymes. Whatever that means.
The most important part of the day, to me, was when I glanced at the check-out sheet. Whatever you call that paper that the doctor writes on, that you take to the nurse at check-out. In the past few visits, under Diagnosis, he’d marked numbness or myelitis. This was the first with an ‘X’ by Multiple Sclerosis.
Long story short (too late!): Just when I was planning to sit back and slow down, things have picked up again. As always, I appreciate all the well wishes and kind emails and shared stories. Just like everybody has a gay aunt, it turns out everybody has an aunt with MS, too! I have neither, but I’m guessing that I’ll get to be both for my sister’s future mutants. Bring it on!Confidential to Bethita: That wasn’t so hard, now was it?!