I haven’t posted much but I read everyone’s posts daily. And I have learned a lot from all of you! Here is what’s been going on with me...
For the past six years I’ve been traveling three hours to Albuquerque to see a neurologist at UNM (not an MS clinic). I have been seen by four different doctors, none of them MS specialists, because one by one, they leave the clinic for whatever reason. My current neuro is a nice enough man, but not being an MS specialist, doesn’t offer me any options.
He has now diagnosed me with SPMS. He spent time with me to go over my latest MRIs, and ended the visit by saying that I am doing “remarkably well” for someone that has had MS for 26 years.
Well, I don’t feel remarkably well!! In the past five years I have progressed quite a bit. It started with a slight limp, and now I use a rollator. I have fallen frequently (including off of my horse twice, so I no longer ride 😪). I have tremendous pain, spasticity, dystonia (curling toes), incontinence issues, numbness, blah blah blah. You get the picture - I’m starting to progress rapidly. And depression will be next, which I’m desperately trying to fight off.
So at my last visit I asked about Ocrevus. He very matter of factly replied I wasn’t a candidate for that because I am SPMS. But I shouldn’t worry because they are working on a lot of great things in MS research and there would probably be something coming for SPMS in the next TEN YEARS!!! Ten years is a long time for this evil disease to wreak havoc on my body! I don’t think I can wait that long.
After that visit, I went home pretty dejected, and immediately went online to research. I notice many of you with SPMS are on Ocrevus with good results so far. That’s when I decided to fire him and find an MS clinic with MS specialists. I just refuse to give up that easily - I’m sure many of you can understand!
I found a clinic up in Denver - Rocky Mountain MS Center. It will be a 4 1/2 hour drive instead of three, which means two overnight hotel stays, but I’ve decided it’s worth it and I have an appointment September 11th!
I’m very excited to hear what my new specialist has to say. It’s been a long time since I’ve had to “start over” with a new doctor though. If anyone has any advice or tips for me I very much welcome them! Thanks to all of you just for being here. I really need your support.