As I mentioned in my really long post, Off to see another wizard, it was a little bit of a stressful experience. In hindsight though, everything that happened that day until I met her, can be chalked up to the fact that it was new, and I wasn’t prepared. I feel that if I see her again, it will go much smoother.
As a person, and as a doctor, I liked her a lot!. She spent over an hour with me talking to and listening to me. Yes listening! For that reason right there I should claim her as my doctor. I will explain the reasons I am hesitant in a moment, but first I would like to tell you more about the positives.
Did I mention she listened?!?!?!? I never felt rushed, or like I was an idiot as some doctors with a god complex make you feel. When I was done giving her my history, she went through each of my 4 MRI’s with me, pointing out which lesion was most likely responsible for each symptom. Would you believe no one has ever done this with me before? I have been told that I uncharacteristically have more lesions in my spine than I do my brain, but that was it.
Random Fact : Most people with Multiple sclerosis might have ONE lesion in their spine for every 3-4 in their brain. I have 3-4 in my spine to every one in my brain.
The doctor compared each MRI with the previous one that I had, pointing out that while I had no NEW lesions, but several of the older ones had gotten larger. I wasn’t surprised by this information I also wasn’t surprised by the new diagnosis or “promotion” to Secondary Progressive Multiple Sclerosis, instead of Relapsing Remitting MS.
What Is Secondary Progressive Multiple Sclerosis?
Here is the link from the National Multiple Sclerosis Society: https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Secondary-progressive-MS
IMO, it means I’ve had MS a long time. The damage that has been is done, it’s not going to get any better. I may or may not experience progression, but if they change my diagnosis in my chart to SPMS instead of RRMS, there are less treatment options available. Even though I have a limited number of options available as it is, why shoot myself in the foot? So mental note made, but let’s keep it out of the chart ok?
Another random fact: When I was diagnosed with MS, there were only 3 disease modifying drugs available, and they were all relatively new. Today there are over 20 that have been approved for the treatment of MS.
The next thing we discussed was how I wanted to proceed going forward. Did I want to stay on the same treatment? I wrote about having to change drugs in the post below, but I don’t think I mentioned the fact that I did change to Ocrevus in September of 2022.
I told her that I made myself (and everyone else) a promise that I would give Ocrevus a try for a year, as long my symptoms didn’t suddenly worsen. I explained that my current bonehead doc would write the prescription and send it to my Primary care doctor to sign off on so that I could have the treatment locally. I would like to continue doing that if she also didn’t have privileges at the cancer center where I receive the treatment. She responded that it shouldn’t be a problem. We also briefly discussed whether or not to have my port removed, but that’s another story.
The final thing we discussed was another new diagnosis. CRPS Chronic Regional Pain Syndrome. I will write more about that in another post in the future because I still have many more questions than answers.
Overall I can’t say enough positive about this doctor. She was intelligent, compassionate, patient…..etc.
Why I’m hesitant
In my experience it is very difficult to find BOTH a doctor and their nurse, staff or medical assistant that you like. Most of the time when you call, you have to deal with the staff instead of the doctor. So far, the doctor is a 10, but her medical assistant is very unprofessional and did not appear very knowledgeable about drugs that are used in symptom management for MS when she was reviewing my list. That kind of caught me off guard.
Someone else called from her office after my appointment and said, “I’m following up after your appointment with the doctor. You do know that you will have to come up here for your infusion correct?” Um NO! I will not have someone drive me an hour and a half away to receive a 5 to 8 hour treatment and then come all the way back to pick me up! I explained that I was able to get my last two Infusions locally, and how I believed the previous staff accomplished this. I told her that I had discussed this with the new doctor and asked her to review her notes. Strike two for the staff!
It took me 3 months to get my first appointment. I truly hope that it is not that difficult in the future, but I won’t know until it’s time for my next infusion in September.
Please keep your fingers crossed for me that her staff is more competent than they appear, and that I don’t have to give up my first born for an appointment!
MS Graceful...NOT! 