agravy
11-20-2007, 10:48 AM
my official dx is demylenating disease, unspecified, spastic paraparesis, neuropathy, & basil artery migraines (BAMS). I had a LP done a little over 2yrs. ago that showed elevated basic mylen protien levels but not Obands. This was done a week after my first episode of numbness in entire rt. side of body. I read that these levels can be elevated in a ms patient just after a relapse. My neuro. (a ms specialist) said it was nothing to worry about. Then I had 2 bouts of ON dx by a neuro. opthomologist. She alos stated that I had no periferial vison & had colorblindness. My neuro. did a vept & again said it was a little abnormal, but nothing to worry about. He has been doing MRI's every 3mts. finding only 1 lesion on my spine & degerative disc disease. Did I mention that I also see a uro. & have toself-cath4x a day dueto myneurogenic bladder. Now I am taking baclofen, neurontin, marinal, topamax. restoril, flomax(bladder), klonopin, loratab, paxil, & iv solu-medral 2days monthly. My neuro. says he isn't ruling out ms yet( they have ruled out everything else). What else could there be. I have all the symptoms, which he is treating, i have to use a walker alot of the time. He is discussing a muscle biopsy???? He wanted to start me on IvIG, but insurance denied it without a dx. What is he waiting on fora dx? He keeps saying that it takes some people longer than others to get a dx. Is he waiting on me to meet the McDonald Crieteria? I thought that you could get a dx without going by that if you had enough clinical findings, documented relapses, etc.. I guess I'm just confussed as to what my dr. is thinking & how he's treating me. it seems as if he's trying to treat me as if I have ms, but is affraid to give me the official dx & start treating me with the real ms drugs so that I don't progress, hopefully.
Please someone respond.
Please someone respond.
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mitch512u
11-20-2007, 12:43 PM
The questions you raised are best answered by your Dr.. Did you ask him what he/she was looking for wilth the muscle biopsy? Have you asked your Dr. why the hesitancy to dx.?
Have you read the McDonald criteria? I believe that it incorportates clinical findings along with the Sx's your having...among other criteria.
Don't be afraid to DEMAND answers, the doctor is YOUR EMPLOYEE! If your not happy with your Doc. then fire him/her and hire a new one.
Mitch
Have you read the McDonald criteria? I believe that it incorportates clinical findings along with the Sx's your having...among other criteria.
Don't be afraid to DEMAND answers, the doctor is YOUR EMPLOYEE! If your not happy with your Doc. then fire him/her and hire a new one.
Mitch
Bearygood
11-20-2007, 01:07 PM
What is he waiting on fora dx?
That unto itself would be an excellent question to ask your doctor. The NMSS has the 2005 revised McDonald criteria on their website. It is not determine by sx but by different combinations of presence of lesions, LP and identification of more than one attack disseminated by space and time.
My other question/comment is that there is an MS like disease (some say a variant) called Devic's in which visual episodes are not uncommon and there are lesions on the spine but not brain. In terms of a true mimic, Lyme is probably the closest you can get but I'm assuming you've been tested for that (sorry, can't remember).
I think you should call your doctor. Your questions are very reasonable but he is the best equipped to answer them. :)
That unto itself would be an excellent question to ask your doctor. The NMSS has the 2005 revised McDonald criteria on their website. It is not determine by sx but by different combinations of presence of lesions, LP and identification of more than one attack disseminated by space and time.
My other question/comment is that there is an MS like disease (some say a variant) called Devic's in which visual episodes are not uncommon and there are lesions on the spine but not brain. In terms of a true mimic, Lyme is probably the closest you can get but I'm assuming you've been tested for that (sorry, can't remember).
I think you should call your doctor. Your questions are very reasonable but he is the best equipped to answer them. :)
moore170
11-20-2007, 04:05 PM
The wait game seems risky to me but if you are comfortable with your neurologist just go with the plan If not, get someone else! Your questions are all legitimate and it seems that you have a great understanding.