I started out with a dx of "stocking/glove peripheral neuropathy" and bilateral CTS, the p/n blamed on extended use of flagyl. After almost 8 years of worsening numbness, parasthesias, and weakness, plus the addition of a couple episodes of vertigo and the "hug" I moved my neuro care to the MS clinic. Right now I am carrying a dx of "transverse myelitis" and he is working to rule out myelitis optica (abandoned the p/n dx because of strong deep tendon reflexes which should be absent in p/n). . . but is not calling it MS yet. However, since I saw him a couple of weeks ago I have been having a flare up of symptoms, worse pain and spasms, and recently headaches. So far my MRI's have not revealed any "smoking guns" so to speak, but my neuro acknowledges that a negative MRI is not definitive for a negative diagnosis either.

I believe I started out in 2002 @ 2.5, which has progressed to a 5.5 at present. It is hard to assess completely based on neuro symptoms because I also suffer disablity from Crohn's, being some incontinence (I have no large bowel) due to a less than perfect anastamosis of my j-pouch. I haven't worked since 2002 due to Crohn's. I can still walk without an aid.

My symptoms began at around age 50. Eight years seems like a pretty speedy progression, especially since I was supposed to be living a very close to a normal life by the end of 2003 following my GI surgeries, only to have my neuro symptoms kick into high gear.



My question of the day: How do you respond when people tell you they hope you will 'get well" or be "feeling better?"