Mandatory Rest Period: MOVED!


Last week's appointment

So, I was at the MS clinic last week and got to ask the questions I had about myself and in particular the Benign vs. just RRMS. So, he said that there are a couple factors that give that diagnosis even though it is prior to 10 years of data. They know from history of people with Benign MS that the first major attack (where diagnosis is usually given) is a sensory problem. They also know that those people are usually young and often female at a rate of 2 to 1 over men. And he said that because I am fully ambulatory I also fit into that category. And because I have had sensory stuff first the likeliness of my next attack being sensory is high as well. So, because I fall into these criteria they can say that my path should be Benign based on how other Benign patients pathes have been. Both my Neuro and Opth Neuro are in agreement to not give me that IV steriod... Solumedronol (sp?) as my body is healing my sixth nerve palsy on its own and they feel it'll be a complete recovery. In fact the words he used were "you won't be able to tell me what eye it happened in by next summer". Good, I say, except I have a memory for these things and will be able to remember (smirk).

Other random things I found out:

- my neurologist talked to me about not feeling like I did before the attack and that I won't likely ever feel the same. He said that in October he changed my life by giving me a diagnosis that NO ONE in their right mind could not be affected by. He said it was kin to telling a 55 year old man that he just had a heart attack. Its something that emotionally changes you forever. How you think about yourself, how you think people think about you. He said that the hardest thing for me will be in convincing people not to baby me just because I have MS. I appreciated this chat as it reminded me to be normal.

- Heat! Damn, now we aren't going to buy a hot tub. Boooooo... So, heat doesn't bring on an attack, however, it will let your body bring up past sypotoms from attacks if it is actively demylating. Its not good to remind your body how to do that. This also explained why every time I travel to somewhere hot, I get sick. Hello northern vacations from here on in! Darn I wish I would have gone to Sweden with my husband to the ice bar. That would have been perfect for me! LOL.

- My Evoked Potentials tests came back all okay. Yay, I guess? I think that test was a wasteful one and it hurt like bloody murder. Don't have this done if you can opt out. Do the SEP one but not the VEP one. The Sensory one is fine and the electrodes are just on your head. The VEP one is the one that hurts when they put this electical current through your ankle to test how fast the pulse travels to your brain. Whoopy. My body moves messages 210km/h. I'm not sure how that helps me. I guess if it was slow they could have said that I have remenents from my 2001 attack.

- I asked my husband to print out my questions before my appointment. He had to fly out of town on the day my appointment was and couldn't come. He put an extra question on my list. It was "ask Dr. Oger how come your husband is soooo sexy". I didn't read the questions prior to the time I was sitting in front of my doctor. I didn't ask him of course, but it was pretty funny in the seriousness of the moment to see that and be reminded of Tod. Lesson learned? Give your spouse your questions ahead of time to see what happens to them at the appointment ;)


  • Damn, you are soooo lucky. When I got my RX, the doc said this. "Please sit down, we found out why you are having numbness and the balance problems. You have MS, sorry about that. Here are your MRI images, the receptionist will send a copy of your papers to your family doctor." Ack. I stumbled out of the place in a fog and went right to the book store. (this is pre-internet explosion) It's nice to know that some of the medical community is coming around.

    By Blogger mdmhvonpa, at 6:53 p.m.  

  • Oh yikes. Thats awful! I am very lucky with the doctor I have at the MS clinic. He said to me in the very first appointment with him "Tell me what I can do for you in this appointment". Both my husband and I were stunned at that opening. No doctor has ever said that. We were able to ask him anything and feel like he would respond genuinely and with care.

    By Blogger Kim, at 8:09 p.m.  

  • Interesting after reading this I wonder if I was newly diagnosed if they would call it Benign. I don't think that term was in much use 7 years ago when I was diagnosed but we sound alot alike.

    Being married to an MD I had a multitude of doctors ready to test and medicate me regardless just as preventative. Heck, that's what my good insurance is for.

    My blog is mostly about being a Mom and not so much about MS but it's there.... feel free to come on by anytime

    By Anonymous Anonymous, at 7:38 p.m.  

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