When I moved down here I had a very hard time trying to get an appointment with an MS doctor. See My Life with MS – Background. Now I’ve had the same doctor for 10 years. I see him every six months. A couple of weeks ago I received a letter canceling my appointment in July and giving me a new appointment in December. This will have made it a year. The same thing happened last year. I got upset and called the office to ask why. I was told that the appointment in December was the only one I could have. I inquired why it seemed to be so hard to get a follow up appointment with him. I was told that someone would call me back, which never happened. My next step was to write a letter to him through the patient portal. In the letter I again expressed why it seemed so impossible to see him once every six months. I explained that I felt this appointment was important to me because the last time we had discussed changing my medication from Ocrevus to Mayzent. I was careful not to express my insecurities, my imagined reasons for not giving me an appointment. I had thought that because I am in my 60’s, that I should just stay on what I’m already on and that there was nothing more he could do for me.
Two days later I received a response directly from my doctor instructing his team to make an appointment with me for the following Thursday. I have to mention that this new appointment was at VCU in Richmond. I made my appointments at a 2nd location nearer to me, that I can drive to. The Richmond location, my husband has to drive me to. My doctor took me on time and he explained to me that he wasn’t even aware they had rescheduled my appointment. At this time I did express my thought that maybe he was giving up on me and to continue what we were doing since I’ve pretty much have had no changes in my condition for a few years. He said that was certainly not the case. We discussed changing my medication and went over he pros and cons of staying with Ocrevus or changing to Mayzent. I ultimately decided to stay on Ocrevus because I already knew about any side effects and haven’t experienced any. By starting Mayzent, I would have to watch for new side effects. Also since they both do the same thing, which is to stave off the progression of the disease, I figured there was no incentive to changing.
There are no drugs for Secondary Progressive MS, for that matter none for other types too, which would in some way help regenerate or change/reverse the progression of the disease. He told me of a trial for RRMS, very intense, with large doses of chemotherapy and stem cell transplant. Another study for progressive MS and if I would be interested. I said I would if there were no placebos. He would check for me. He did check and the cut off age was 60, oh well. I told him of the continuing weakness in my left arm and hand. He ordered a new MRI. He was very thorough and spent a lot of time with me, which I appreciated. He told me to keep the December appointment, which I did because again, that would be six months.
I really wish some people with MS would read my blog and tell me abut their experiences with doctors and treatment. I’ll have to motivate and write the damn article for the MS/brain/spinal magazines, which would hopefully generate some traffic.
I’m in Ontario, Canada. I waited 3 months for an MRI that found lesions, and a further 7 months to see a neurologist. So, from time at presentation at my MD’s office (I was having tremors) to seeing a neurologist will be 11 months. My neuro appointment is May 31st. Let’s hope they don’t cancel!
Thank you for sharing that. I was under the impression that Canada was really on the ball when it came to treatment for MS. When I was first diagnosed most of the good information I received came from Canada. I find it disheartening to say the least that it is so hard to get appointments with these doctors. These are life altering diagnoses and I question why the wait is so long. I haven’t been given any reasons why this happens, have you?