MS Center Visit

Today I saw a neurologist at a world-renowned MS Center. So fortunate that it is less than an hour from me! I will call him Dr. Harry.


I was pretty nervous right before the appointment. Like "about to play the organ in stake conference, jelly-legs" nervous. I was considering whether he might be nice... might be rude... might be Aspergery (which I am fine with)... might say it is in my head... might be ready to put me on a DMD tomorrow... 

What I was NOT ready for was that he would know nothing about me when I came in! It probably worked in my favor, given what my other neuros might have put in my file, lol. 

Apparently my paperwork and MRI discs were misplaced. Maybe because my original appointment was with a different doc, and I was switched to this one to get me in earlier (a 6-week wait was considered fast tracking). 

So I had to tell Dr. Harry everything from the beginning. He examined me--I would not say that it was the most in-depth ever. But it covered all the bases. 

I think he is not the kind of guy who is going to hold your hand or consider your feelings, but not because he does not care--because it does not occur to him that you have feelings. Spectrumy. Totally flat affect. I am cool with that, if he is a good doctor. 

He did not tell me anything that he saw or thought until I asked... So... What did you see in my eyes? Oh, bilateral pallor. Well, thanks for telling me! 

We will have a talk about that next time, if it happens again. 

Dr. Harry saw the same stuff as my internist, Dr. Rob: left sided weakness, balance issues, sensory stuff. Nice to have that corroboration when Dr. Harry had not seen the Dr. Rob's report. 

Dr. Harry wants to look at my MRIs and then get back to me. He did not seem deterred by the fact that my CSF was negative (which I told him--again, he did not have my packet). I asked if I need to have another MRI of my spine, since the first one was on a machine too weak to find lesions. He said possibly not, that my brain MRI might be enough. He can treat the symptoms of spine lesions without seeing them. 

He was ready to be done then, but I let him know that I had waited a long time for this appointment, and it was kind of not my fault that someone misplaced my packet. Let's talk DMDs.

Dr. Harry is a fan of the CRABs (Copaxone, Rebif, Avonex, Betaseron--all older MS drugs) for their safety record. They are not going to kill anybody. He tried to steer me away from Gilenya or Tysabri but would consider them if I really, really wanted them. We talked about the pros and cons of the different drugs. Here is a website briefly describing these drugs. 


My take... The CRABs have been shown to reduce the chance of developing new MS lesions by about 30%. Whoop-de-doo. Gilenya and Tysabri, which have been around a year or two each, may reduce the chance of developing new MS lesions by about 70%. Um, hello, no brainer? Well, Gilenya makes you more susceptible to infection, because it suppresses the immune system, while Tysabri might give you a fatal brain infection. But it is a really small chance.
Dr. Harry said I might be a candidate for two clinical trials another doctor there is conducting. 

One is where some people get Copaxone and Estriol, while others get Copaxone and a placebo. 

The other trial is for a new drug similar to Tysabri but apparently safer. In this trial, some people get Avonex and a once-weekly injectable drug that ends with -mab. I forget which one. I looked on their website, and they are trialing rituximab, ocrelizumab, and daclizumab--I think he mentioned daclizumab to me? Anyway, the control group will get Avonex and a placebo injection. 

He put in for the secretary of the doctor doing the clinical trials to call me. And he will let me know what he thinks of my MRIs, the bloodwork he ordered, and the urine test. Checking out D and calcium stuff. 

I went into this kind of down on the CRABs and thinking I wanted Tysabri. But now I think I want to be involved in one of the drug trials. It sure is nice to have options, but deciding what to do is difficult. 

Dr. Harry is supposed to call me next week with the results of the blood, urine, and MRI review. You had better believe I will be on the phone if I do not hear from him!