After two weeks of riding the almost non-reality that MS has taken up residence in our home (and my brain), Joe and I were excited to meet with the neurologist. Perhaps anxious is a better descriptor. On the way to the appointment, we picked up the drug information and how it relates to breastfeeding mothers from the lactation consultant. We had a long list of questions ready to ask and have answered. And my mom stayed at home with Ava to babysit and put her to bed so that Joe and I could enjoy a nice dinner together after the appointment.
What we learned after all of this: neurology appointments do not make good date nights.
The doctor we were meeting with was the first neurologist I had met with 2 weeks ago. He was thorough, calm, soft-spoken, attentive and well-informed. We both liked him a lot when we first met with him. The doctor who took over my care at the hospital was, I'm sure smart and very good at being a neurologist, but lacked any comforting bedside manner and wore *really* bad golf pants the second day we met with him. He would come into the room, tell us briefly what was going on, what he found on the scan, and why he was ordering more tests. Then he'd stand up and linger at the door - half in, half out, almost hoping that we wouldn't ask anymore questions so he could bolt down the hall and not see us again. We were glad to know that he would not be *my* neurologist when all this was over.
Unfortunately, I walked out of the appointment wanting to find a new neurologist.
Although the doctor is still awaiting one more test result to rule out some optic nerve disease, he is fairly certain I have MS. As of today, I don't have an actual diagnosis. I have probablies, most likelies and fairly certains. I'm not expecting to go back on the 22nd and come out with an entirely new or different disease, but it would be nice to actually have a diagnosis and a discussion about what that means. Yesterday's appointment was the drug appointment where we'd meet with the doctor and talk about the drugs on the table and then his nurse would go into more detail for us as we made our decision. Luckily I brought the information from the lactation consultant as he did not know how these drugs would interact with human milk. He did remember that I was nursing, but how it felt to me was that it was more a hinderance than something positive that maybe just needed a little more consideration. The fact is I need to wean - I just wanted to do so on my terms. I've learned that life holds no regard for my terms.
Joe and I went into the appointment knowing a little more about MS than perhaps the average patient who is just diagnosed. We've witnessed it in our family for the past few years since my brother-in-law was diagnosed. We're also internet savvy and can read, so we went in understanding a little of how the disease works. Good thing, because we came out of the appointment not knowing a whole lot more than we did at the start. I know we have a lot of reading and learning to do on our own, but I do expect some amount of knowledge to come from the doctor. Afterall, they're the ones who studied and have practiced for many years and (should) know enough to answer all a patient's questions within reason. I didn't expect him to answer everything with a solid answer; I know that MS is a largely unknown illness, but I expected some anectodal information from all his years as a doctor.
When asked would I likely have vision problems since I showed delay on the vision test, he replied, "Well, you already have vision problems because you have a delay." I'm not sure it's asking too much to expect a little more in an answer. There was no, "In my experience, people who show a visual delay often [fill in the blank]" or "There have been some studies that show . . . " or even something as vague as, "I know the idea of losing your sight can be a very scary one and I wish I had more to offer, but we just don't know." I need a little warm and fuzzy. Just a little bit.
There is no warm. No fuzzy. And no positive. I wanted him to walk in and say, "Hello Dale. I'm so sorry all the tests point to MS. I know this was something you were scared of last week when I met with you. I know it's a scary disease but I want you to know that the medications we're going to discuss today have shown tremendous results on many people just like you. Oh, and how's your cute little baby?"
"I'd rather have MS than diabetes."
This positive gem was handed to us at the first appointment and to date, remains the only positive thing I've heard from either of the doctors we've met with. Thanks, but I'd rather give myself insulin each day, exercise and and follow a low-fat, low-sugar diet and not worry about the five lesions on my brain and the potential for more. Is there a form I fill out to return the MS and exchange it for something less scary? I'd even be willing to stand in a very long line if need be.
We left the appointment feeling less positive than we did going in and about 3 pounds heavier, armed with two giant packages of drug information to mull over. Enter drug marketing. Each package contained photos of healthy, young people (some holding babies), smiling, fishing, hiking. It made me sick to look at. I've always despised the drug commercials on TV. I'm not a doctor, nor am I anywhere near qualified to know which drug I should be taking - but that's where I am now. I need a coin. The two choices are Copaxone (with the tag line, "ThinkThin" - referring to the really thin needles I'll be injecting everyday) and Rebif. I think I'll go with Rebif. Their packaging materials included a free notepad, a fridge magnet and a pen! Who can pass up free stuff!? I think the next time I go to the doctor with a cold, I'll ask him to give me three antibiotics to choose from (of course, I'd need to see their marketing materials and see which uses an image of a woman who most closely resembles me before I can make an informed decision).
But free stuff *is* cool!
Something else that's nice is a parting salutation. "Goodbye and have a great weekend" would have been nice to hear, but by the time we turned around to say goodbye to the doctor, after he led us from his room to the checkout area, he was already gone.
The long drive home to follow.