"We are fast becoming a Big Pharma's and some Docs worst nightmare. ....Getting to smart for them and becoming proactive in our own health concerns and..."


Arrrrr Arrrrr Arrrr Sally - how true!

It was my MS neuro who told me to find a good forum. Best thing I could have done for my care, mental health and education. We may be crazy but we aren't stupid!

Teddy:

I can't count the number of times I have hauled myself out of a hot bath only to lie down on the bathroom floor because I couldn't make it out of the bathroom. I won't give up my bath because I hate showers (tactile thing), so I have one just before bedtime. In an odd way it's a very pleasant feeling, I fall asleep faster.

It's true. At least mine is looking at the big picture enough to keep me on Betaseron.

Sally, we definitely have the doctors running scared!!

I had one neuro resident tell me last year she was going to give me a blood test to rule out sarcoidosis. She said to me that she wouldn't explain what that was "because you'll only go home and look it up on the internet anyway". Darn tootin' lady!! The nerve of patients - wanting to find out about diseases they're being tested for...

Cricket, I haven't had a hot bath since, I'm too much of a wuss! Plus it wasn't a good look having to call hubby to haul me out! (Rest assured I have, however had showers!!!)

Spuggs, I remember reading your story at BT1 - I can't believe you've gone through so much, and with such obvious signs, without having a spinal MRI. I hope you do start to look for answers again.

I am in the 'just drop me in the tub' club for dx.

LP was negative at the time ( but I was not in an attack at the time either). My MRI's were either not read right or they are 'normal'; I was never told.

HOWEVER: I have had clinical signs, that led to my dx. If I had gone to different Drs., most likely everything would have be taken as only isoloated incidents, not related. With continiuing with the same Dr, that was, and still is, to not give up everything taken into consideration helped I think. He found signs that I did not know about, clonus, and a couple of others that I can't remember at this time, that makes it MS.

That is my (very long) story in a nut shell. I am on LDN, for 5 months now, and am doing wonderful! I can use my hand and arm again! I am not totally exhausted every day, and I have even stayed up till 4 am talking to friends recently!

Am I perfect? NO WAY! But I feel the best I have felt in more years than I can remember.

Hi Liisa!

If you don't mind me asking - did you have evoked potentials or more than the one negative LP on your road to dx?

So glad to hear the LDN is working for you. Must be nice to have a doctor who isn't afraid to dx and treat you and who believes you.

Hope you continue to improve.

Cricket-

I will NEVER have another LP! never never. had a 'normal'? EP; which is to say that it showed signs? Now I am confused myself. What ever the results were, I took it as that everything was good, when it really meant that I was not having the usual responses?

Are you as confused now as me? This was several years ago now and I really can't remember how it was presented. sheesh, maybe I just need more coffee

This article shows how subjective the MS diagnostic process can be for some people.

http://msj.sagepub.com/cgi/reprint/9/5/481

Interesting artical. I saw where the techs reading the scans don't tend to elaborate, none of my MRIs talked about numbers of lesions or size and only gave vague referance as to location. On a follow up MRI all it said was same as before with a few new ones, no elaberation at all. THis is shameful.
Pat

This study utilized neurologists, not radiologists, to read and interpret MRI scans. I'm at a loss to understand why they would do this.

Same here Pat, I asked about my first MRI and was told "It's typical MSy" Hmmmmmm. I was too doped up to ask much.

My second and last MRI...I asked for a copy to be sent to my Neuro, so we could go over it, and He didn't have it there.