Yesterday was an insanely busy day, but as promised, I have updates on my appointment with my new neurologist. This is lengthy, but so was my appointment!
First of all, the almost two hour drive (each way) is not an issue for me. Everyone mentioned how awful that would be, but thankfully I am used to the drive from Columbia to St. Louis, so with a good playlist, it was not bad at all!
Now-there was something that I very much did not prepare myself for-and it slapped me in the face as soon as I walked into their office. Everyone there is treated for MS. All the patients I saw were suffering from the same disease I was. This really hurt my heart. When I arrived, there was one patient I held the door for so that she could get out with her walker. When I was checking in, I turned and saw a man so disabled he was confined to his wheelchair, and after sitting in there with him and his wife for about 10 minutes, I realized he likely had no control over any of his body. One other woman came in while I was waiting, and she walked normally, and like me, had no visible signs of MS. I saw other patients as I was leaving, but I chose to not pay attention much to their condition.
Every time I see someone like these patients, it is very eye opening to me, and the possibilities of my disease. It makes me so anxious and is the reason I try to not read public forums online-because I would rather not think about it. My old neurologist is in an office that treats many things, so I guess I have always assumed that the patients that I see there could have any number of neurologic diseases. Yesterday I was forced to face patients all suffering from the same disease I am. As I sat there, sadness tried to consume me, and I really, really wished I wasn’t alone at the appointment. Thankfully I was called back before any more examples of MS walked, or wheeled, through the door.
The visit started like any other doctor appointment. The medical assistant, a sweet girl named Shelby, did all the general vitals and left me in the room. Uneventful, but my Dr. was right behind her! We talked about my history and the timeline of everything that has happened to me and my health for the last 4.5 years. I thought I had memory issues until I went through this with him. I can’t believe how much I could recall! I aced my physical exam, which for those of you that do not know how this goes, you are checked for strength on all extremities, balance, eye focus, simple short-term memory test, sensation testing etc. It sounds like a lot, but it is all very quick. I was told that I look great and strong. Perfect. Tell me something I don’t know, doc! 😊
One thing that I don’t talk about enough, but is probably my biggest symptom, is cog-fog. (Cognitive fog). I thought I just had a hard time focusing, was less smart than I used to be, and had lingering pregnancy brain almost 4 years after being pregnant. The more I have researched this over the past year, I have realized that it is likely my worst MS symptom. My old neurologist gave me medicine to help with being more alert, but it was like jet fuel in my body and I would be up for entirely too long. I researched other options, and finally decided to ask to try one of them yesterday. He is on board, and is letting me do it! I love a doctor who will listen to my wishes, and allow me to help make decisions on MY health.
Now on to the next part–treatment. We had already talked about the fact that I have kids. But this next part really took me back, he asked if I have joint custody, which I told him no, I have sole custody. Then he says “So we really have to keep you healthy. Why are you on Copaxone?” I think I looked dumbfounded by this. My thoughts: What do you mean, why am I on Copaxone? That is a stupid question! So I am healthy and my MS doesn’t get worse, and so I do not have all the awful side effects I hear about from so many other drugs. It is safe. It helps. I have been stable. My actual reply: “Well, I researched a lot when I started, and it seemed like a good starting point as far as being effective and least side effects. It has worked, so I figure I might as well stick with it.” I felt confident as I said it, fully prepared to defend and demand my desire to stay on this drug.
Then he started with the facts. Quick side note: I don’t understand how one persons brain can store so much knowledge. He is very smart, and I was shocked with his wealth of knowledge, or ability to fake it so well. Either way, impressive. There was so much information here that I could not even begin to trust what I believe was said at this point, so I can’t tell you everything. I know that stats I would try to say would be mixed up between different drugs and trials, but it was all so eye opening. He told me the effectiveness and timeline of patients on Copaxone. Compared this to Tecfidera. And finally, Ocrevus. The point of all of this was, or my interpretation of it, is that while I have been stable on my treatment thus far, it is also possible that my MS was just not worsening during that time. In his opinion, and I believe this to be true, Copaxone is one of the safest in terms of side effects, but most risky as far as protection from MS progression. I have been lucky, but how long will I have that luck? What am I waiting for? What if the next attack I have leaves me much more disabled?
We talked about how my wish to start with something safe, and then progress to better drugs as my disease worsened, was an old school approach to treating MS. This makes sense, since this mentality started for me when I was diagnosed and met with my first neurologist in Savannah GA, who is very old school, in my opinion. But after talking with my new doctor, it made so much sense. Many of the people who followed that line of thought have not fared well long term, so why not get ahead of it, with the best medicine available, and have a lot better chance of not having another attack. Why hadn’t I thought of this yet!? Such a simple concept, and I try to be proactive in most everything I do…
We reviewed my MRIs together, which I was so thankful for. I had only seen them once before, when I asked my last neurologist to review them with me. Since I had seen them before, there was not really much new information here, but it is interesting to see, and I did like looking at them. He counted more lesions than anyone before had, which I questioned, but they were there from the beginning, so I suppose it is fine. The review of a brain MRI is very funny-it seems like anyone could do it. You just look for white spots, and say “oh, that’s one. And another….and another…” I am sure there is a lot more that goes into it, and I am not saying I am trained to diagnose MS based on this, I am just saying, it is funny how simple it is to count these white spots that in my mind, could just be imperfections on the images. At least, that is what it looked like when I studied photography in college and worked with negatives! 😊
All in all, my doctor spent an hour and 15 minutes with me. I left feeling so confident about him, my future with MS, and am likely going to be switching therapies soon. Now the long drive home, in the rain none the less.
I have now had 24 hours to think about it all. The drug I am leaning toward is a newer drug, Ocrevus. It would eliminate my need to give myself shots 3x a week. Instead I would go to an infusion place every 6 months for 4 hours or so to be infused with the drug. I would decrease the risk for disease progression significantly, and cut out all those shots? Only think about my MS twice a year?! When I explain it to my friends, they say “well yeah, why wouldn’t you switch?” Well, I even though I try not to do too much researching about the bad parts of this disease, there are three little letters that terrify me to my core and give me pause.
Progressive Multifocal Leukoencephalopathy. Fancy words for a virus in your brain that will likely kill you. I knew these letters from a different drug I had researching in the past. It’s not common. In fact, I don’t think it is confirmed that this drug has caused this as of yet, but it is possible, or they wouldn’t mention it. And the drug is less than two years since it obtained FHA approval, so who knows what could happen. On top of that, even if they rule out that possible death sentence, we don’t know what happens when people have their B cells decreased over a long period of time. So it’s just scary.
It’s normal to fear the unknown. But to have to make major life and health decisions without all the answers is one of the worst situations.
I plan to think on this for a while. I will do more research. I will talk to a lot of friends and family about it. Some of my best friends are already researching to talk to me about it. I truly have the best support system. If you have thoughts, I would love to hear them!
To my MS friends on here: are any of you on Ocrevus yet?