Monday, May 30, 2005

general status update

Well, a general update on how things are going with me, medically. No new visits with any doctors or tests. I'm waiting for a referral to a Neurologist from my regular physician, Dr. F. For those who may need some catching up, Dr. D the Ear Nose Throat I saw ordered some tests; the ENG test was normal, the ANA blood test was positive - no shock there, it tests for autoimmune disease and I have 2 already, the Crohn's Disease and Ankylosing Spondylitis. So, we've narrowed it down to something neurological. That's a big help. The big concern is that it's MS, since it's also an autoimmune disorder, and I have a cousin with it also. The MRI I had of my brain showed no lesions, but there are still many more tests that I can be put through.

I've been creating a record of every symptom I've had in the past month or so, and it's not making me very happy.
  • vertigo
  • loss of balance
  • loss of coordination
  • visual disturbances - some fixed object appearing to shake or vibrate
  • short-term memory loss (sporadic)
  • problems with remembering words - like being able to see a book on a table and not being able to say the word "book", or see it in my mind and have to revert to describing it "bound pages of paper"
  • fatigue
  • depression
  • tingling in my extremeties - "pins and needles" in fingers, feet, and (I'm not kidding) my butt-cheeks
  • muscle twitching - this is new, a muscle in my hand twitched for 15 minutes this morning
  • hearing changes - in my left ear suddenly the sound became muffled and there was just a whine for about 5 minutes (don't know if this is related or not, but I'm going to tell the neurologist about it)

Something I've been musing over for a few days now is an episode I had about a year ago. With the Crohn's, it's not uncommon for patients to develop vitamin B-12 deficiencies, especially those who have had bowel surgery, like myself. So, I did a little research on the web, found that the deficiency is easily corrected with over the counter supplements, which I have been on ever since. I knew that long-term, severe deficiency can cause permanent nerve damage, and this weekend I found out what kind of damage that is - demyelination of the nerves of the central nervous system. The same thing that MS does. Shit. I even found some suggestions from excerpts from various medical/research journals that a B-12 deficiency can cause MS. Double shit.

I just want to know what's going on, so we can do something about it. The not knowing is driving me nuts.

2 comments:

Ith said...

I hope you get some answers soon. My aunt has MS so I can understand a little bit about what you're going through.

FireGem120888 said...

Wow. That's a lot to deal with... I don't know what it's like for you. I thought the two weeks it took to diagnose me was forever! But Mom pulled strings so that's why everything took less time for me. I can only imagine how you must feel... I'm praying for you, Mira!! Love always, FireGem

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