Without going into too much unnecessary detail, please allow me to summarize my interactions with doctors over the past six to nine months.
Doctor 1: Your leg should not be doing that. I will make you an appointment with a neurologist.
Neurologist: Your leg should not be doing that. Tests show that it’s not your peripheral nervous system. You need an MRI.
Neurologist: You have MS. It’s the bad kind that can’t be treated with drugs. You should see a specialist. Also turn to your right for this lumbar puncture.
Specialist 1: No available appointments for 10 weeks.
Specialist 2: No available appointments for seven months.
Neurologist: Tests confirm that you do have MS. As I mentioned last month.
Specialist 3: We don’t take your insurance.
Specialist 4: You have the good kind of MS. Come back so we can treat it with drugs.
Specialist 5: You absolutely have the bad kind of MS. Probably won’t respond to drugs, but take the strongest possible drugs just in case. Likely disability within 10 years.
Specialist 5 (one day later): On further review, it’s not that bad. May respond to drugs. I’ll write you a letter.
If you’re wondering what goes on at a neurologist’s office, including MS specialists, it’s nothing crazy. Jump on one foot. Touch your nose and then touch my finger. Walk. Walk on your toes and your heels. Feel this vibration. Feel this pinprick. I’ve never been pulled over for a DUI, but I would imagine it’s a little bit similar. You’re being asked to do normally mundane things which you assume you can do, but with an undercurrent of panic. “Of course, I can walk in a straight line! Wait. Dammit! Can I try it again?” It isn’t physically taxing, but it’s stressful.
Between you and me and the internet, I’m sick of it. I feel like I’m on a roller coaster and I don’t even like those in real life. They make my stomach hurt. So does this.
I am coming to understand that there may never be clear answers. I may have some elements of the “good kind” of MS and some of the bad. I may respond to treatment, I may not. I find this very hard because I’m a person who likes a concrete plan, and I can’t have one. It’s judgement calls across the board.
I guess in truth, it doesn’t matter. What will be, will be, says Doris Day. I can make good decisions, but I can’t control the future. Might as well start getting used to that.
P.S. I’m in Charlotte. Daffodils! Family! Above-freezing temperatures! Barbecue! I could go on.