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.
Sending you love love love, Katie.
Thank you thank you thank you. Love to you as well.
Soak up the sun & love in Charlotte. And when you’re back, let’s get together. Those silly boys of ours will surely make us laugh and, as they say, laughter is the best medicine.
Let’s definitely get together soon. John goes into Stowe withdrawal when he doesn’t see you guys, and so do I! We’re back, but leaving again for the weekend, and then hopefully getting back to normal next week!
Enjoy what you can every day that you can. And good luck with all those specialists and the decisions that you have to face.
Thank you so much! Good advice, and thanks for the wishes of luck as well.
Carey and i just had a discussion this morning about not being too attached to our plans…leads to frustration and disappointment. We should plan a get together when you get back and get attached to that.
I think that’s the kind of plan that I’m definitely up for. We’re a little crazed this week, but let’s do it soon!
Katie, no one has any idea what their life will be like in 10 years. When I was diagnosed 20 years ago this week (can’t believe it’s been that long!) I was told to expect the worst, immediately. It makes me so angry to think about all of the time and tears I wasted, worrying about the future. I wish that someone could have explained to me back then how the future has a way of taking care of itself.
Ann, thank you. I think of you often and try to take your advice! Let’s talk soon.
So much of medicine is much more art than science. I am reminded of this anytime I have a more involved interaction with a specialist. I know how agonizing it can be as a plan to not have the ability to plan. Hang in there…
I’m 28 yrs old and a mom of 2 boys. I have had symptoms for about 10 yrs. Aug 2012 I had severe pain with numbness and tingling so I was then referred to a neuro. Jan 2013 first neuro visit I was told possible ms. May 2013 seen 2nd Neuro and still no diagnosis. I too am the type that likes concrete plans. The roller coaster ride just plain sucks. I hope you get answers soon!