Wednesday, February 11, 2009

I'm Off to Cleveland

I've got an appointment at the Cleveland Clinic tomorrow morning, so we're driving up tonight. I'm trying to think of this as a romantic getaway and not quite succeeding.

I'll see the specialist who was first author on the article on CNS vasculitis that I linked to last week. (Here it is again - you can see what she looks like.) She should be able to either rule out that possibility, or else order the right tests and make the right diagnosis. I think I'll be in good hands with her.

I feel very scared about my overall situation. While I've seen real improvement over the past week, I'm still very, very far from normal. Seeing a specialist somehow makes everything seem more concrete and threatening, even though I'm very grateful to be seeing a real expert.

I've had loads of test results come back negative, which is great. I know I don't have several different cancers; lupus or Sjogren's; any of the STIs that can affect the central nervous system; and a bunch of other stuff.

As far as I can see, the remaining possibilities are a fairly short list:
  • CNS vasculitis (rare)
  • MS (my symptoms and MRI don't quite fit, but I'm terrified of it)
  • Transverse myelitis
  • Some weird post-infection reaction (possibly to the surface infection in my nose that I had when this all began?)
The one test that came back showing a problem: Vitamin D! And that after all the time I spent biking in the summer and fall. You'd think I'd have a decent store of it. Anyway, that's being treated.

Low vitamin D can contribute to the risk of various cancers, MS (eek), other autoimmune diseases, and most obviously weak bones. So here's my health PSA for the day: everyone should take a supplement - and get some sunshine!

Update 2/11/09, 11 p.m.: I'm now in the hotel, and since I'm superstitious in certain ways, here are the good portents of today:

1. I got a $67 a night rate downtown with free breakfast and parking at the Comfort Inn, which turned out to be located right next to Cleveland State. The hotel is not a pit. The neighborhood is has the character of an urban college campus, so I feel right at home.

2. The hotel room turned out to be a two-room suite.

3. The hotel wireless actually works.

4. On the trip up, we drove through tornado watches and severe thunderstorm warnings (up to 70 mph wind plus hail) and yet we barely even encountered any rain along the way.

5. My kids went to bed happily with their babysitter (a friend of mine who's spending the night).

Pretty auspicious, I think. :-)


hesperia said...

You're already gone I guess and I don't know if you'll be checking in, but if you do, you're in my heart.

Sungold said...

Hi Hesperia! Thanks so much for the good thoughts. I'm feeling better now that I'm here in Cleveland.

Sugarmag said...

Sungold, Everything is going to be all right. I'm sure of it. You're in my thoughts and heart as well.

Carla said...

Hi there -- I'm hoping that things went well for you today. I know you'll update us. Thank goddess for in-room wireless that actually WORKS. Imagine that.

I wanted to put in my two cents about Vitamin D. I'm not going to go so far as to call this a fad. But I'm always suspicious of a bandwagon that accelerates at warp speed.

My neurologist, who has been treating me for headaches, decided to order labs for checking my Vitamin D (after I told him about my sometimes debilitating mood issues in Jan/Feb/Mar). He said the test showed my levels were "low" so he put me on a prescription supplement. OTC vitamins wouldn't cut it, he said. The dosage was 50,000IU, one a day for 12 days and then once a week maintenance dose after that. He said something that I hate when doctors say: Something like--This explains a lot. Expect to feel much better in just a few days .. fewer headaches and muscle pain, increased energy, etc. etc. And I felt no noticeable difference at all.

I will say, however, that now that winter has progressed, I've not been plagued with the acute seasonal affective disorder I usually experience this time of year. February in particular has been nearly unbearable in recent years.

I recently found this article, which I think discusses the trend pretty well, including the current limitations of our knowledge: I think:

Thinking about you!


Sungold said...

Thanks so much, Sugarmag and Carla. All those good vibes seem to be doing the trick.

As for vitamin D: I don't think it's any miracle-cure in the short-term for anything. But there's sure a lot of evidence accumulating for its long-term benefits; even if 90% of it doesn't hold up, I'm convinced that the advice to shun the sun entirely is wrong-headed.

As you can see, I'm not a sun worshipper myself - my little avatar picture was taken in August - but I tend to think "all things in moderation" is good advice. The article you linked to is very sensible in that respect. People shouldn't expect miracles. And yet I think the downside of supplementation is negligible, while the potential downside of deficiency could be pretty harsh.

The link between MS and vitamin D deficiency has now been at least partially demonstrated at the genetic level:

Carla said...

Well, I'm still taking the Vitamin D, so that must say something about my leanings!