I'm a Zebra !

[JulesL5S1]

My neurologist has told me that I am now a Zebra!  At least in medical lingo, we have to start looking at the Zebra issues.  There are definite problems but he does not believe it is MS.

Updates:
Provigil - now I need only a 50mg dose.  My insurance has denied the claim but my neuro gives me samples and since I can cut the 200mg pill down, then one 7 day sample pack lasts 28 days.  Yes, my neuro knows that I am cutting the pills and has approved that and I called the 1-800 # and cutting the pill will not affect how the medicine is absorbed into your system.

Counseling - I got a referral for a counselor.  My request!  I have lots of medical issues and it is hard for me to tell what is important and what I am rationalizing away.  My doctors are now allowing more time for my appts but I think it would be helpful to have several longer appts with a counselor who can help me review my medical history over the last 10 years.  The counselor may be able to see a pattern.

SSEP - the nerve test on my lower legs - the results from several weeks ago had not been sent to my neuro's office.  I'll follow up to make sure they are sent.

EEG - 72 hour amubulatory is scheduled for early January - hopefully I'll have one of my electrical shocks during the test (ok, we all know that I won't and then the day after I turn it in I will have a full blown seizure!).

New problems:  My left foot is fully "asleep" without pins and needles, except my big toe.  And the last two nights when I had a cup of ice cream my left fingers "froze" around the handle.  I couldn't get the mug off of my hand.  I had to use my right hand to remove my left fingers.  Strange ....

But on the good news side, my neuro is VERY INTERESTED in my case.  He will not stop looking until we know what is going on.  I'm a Zebra!!!!  

[doni54]

Wow, Jules!!

I can understand you gaining the ability to rationalize, but gosh, with all your symptoms..................

Can't hurt going to a counselor as you've said, it can only help to move you closer to a dx.  Especially when they know it's not all in your head?  

I so hate to hear that line, it really makes me angry.  What person alive doesn't know when their bodies and minds aren't what they should be?

Well, I'm sending you my best wishes and hope that you will have that dx soon.  Horses are so much nicer and prettier than zebras............heehee

Hugs
doni

[JulesL5S1]

The good news is that my doctor is taking my symptoms seriously and wants answers as much as I do.  

I still think MS is likely however there are no lesions.

If I stretch my imagination then I can work most symptoms into already dx'ed conditions:

1) When I've been sick, injured or recovering from surgery I've had dramatic declines in health.  This could be MS relapses or if we go with what the MRI's are showing - then extended time lying in bed or sitting in a chair not moving - my bulging disk at C6 and at the L3-L4-L5-S1 level could be aggravated causing the weakness in my arms and legs AND the cataplexy/narcolepsy could then act up because my already fragile sleep/awake stage is disrupted.

You can see my ability to rationalize .... hence why I've decided to see a counselor who works with patients with chronic medical conditions .... And this will add a 5th vote to the eventual dx.  That could break the tie!  Cheers

[Wobbly]

hey...I was told I'm a Zebra too....wow atleast two...

[essdipity]

Hi, Jules. I know about the horses and zebras thing, but I'm not sure how it applies to you. If you have lots of MS indicators and they are looking at MS as a diagnosis, that would make you a horse. The 'obvious' thing, based on observations. If they were trying to give you some obscure diagnosis of a rare disease when MS was staring them in the face, then they would be trying to make you into a zebra.

However, I may have missed something important here. Forgive me if I've forgotten your specifics. Anyway, glad they are taking you seriously.

ess