New neuro, a whole new world

On Wednesday I went to an appointment with a new MS specialist. I am far from pleased with the way my MS specialist has been dealing with my case in the hospital. I have been waiting for months to start new medication and no one tells me why it’s been taking so long. I had to be tested twice for the JC virus for no apparent reason. No one tells me what’s going on, like my case and my MS progression don’t matter at all.

So I figured, since I’m not happy with this, I might as well try someone new and hear what he has to say. A fellow MSer recommended his doctor and I gave it a try. And I’m glad I did because he was interested in taking my case and discussing therapeutic options. He performed some tests and we found out my reflexes are alive and well on my left side and pretty much dead on my right. He saw all my MRIs and he wants me to do some more exams, including a lumbar puncture and an evoked potentials study. I have never done any of these and I wonder why the neuros I saw before never bothered. The only thing I am really freaking out about all this is that he wants me to stay overnight in the hospital, probably in order to do all tests and exams in one sitting, I’m not sure. Now, I hate hospitals. Even going in and out for appointments or picking up medication gets on my nerves. I have traumatic memories from when I was hospitalized at age 5 and it’s like I have all sorts of déjà vus. I know I’m a grown-up woman now and it’s only one night, but still I feel the anxiety building up. Being in hospital is like writing on your forehead that you’re vulnerable and defenseless, away from home.

This is still going to take a while as I have yet no date set. But after all is done and the results come back, he will be able to put me on more appropriate medication in little time. He says he might even be able to put me on Tecfidera, which is not approved in Portugal, under a special authorization. He’s got 15 of his patients on it, and 2 more about to start it. This sounds like a doctor who will do whatever he can to help his patients, instead of overlooking the problem.

To be honest, this has been way more than I expected. My expectations have gotten so low that when I first saw him I thought he was going to put on a sympathetic smile and say there was not much more he could do. I really wasn’t ready to deal with the stress of going to a new, unknown big hospital and have more tests and exams. I’ve been needing a break from all this for so long and I still can’t take a deep breath and let go of my health-related concerns. I’m trying to stay calm and positive and remember that it’s just a little effort before I can be ok, or at least more stable. And that I’m closer to it now with this new MS specialist than I was before. I’ve gotta hold on to that. I found a doctor who is willing to do something for me. And something is still better than nothing.

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3 thoughts on “New neuro, a whole new world

  1. My ex boyfriend is on Tecfidera for about a year and really likes it as he has had very little side effects. A little flushing in face first few days then nothing. He’s had MS for 10 years and was on Tysabri for 3 years before this. He doesn’t look sick at all, which is a blessing and a curse.

    Liked by 1 person

    1. I totally understand it being a blessing and a curse. My main symptoms are fatigue and vision problems so I don’t look sick either. I started on Avonex but had bad reactions to it so I switched to Copaxone, which didn’t give me side effects but isn’t preventing disease progression. So my options now are either Tysabri or Tecfidera. I’ll have to wait and see…

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      1. The Avonex was hell for him and I’m pretty sure he never took Copaxone. He really liked the Tysabri because it was once a month and he had no side effects, but the spinal taps sucked a little.

        Liked by 1 person

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