LIMBOLAND

[Melissa072]

Dr Kantor,

Hi I'm in Australia and had terrible ms symptons June 2007.
                     Bilateral face pain lasting 6 weeks (dull aching, burning feeling)
                     Tingling in both feet for about 3 months 24/7
                      Under both feet have numbish feel but are not numb to touch
                      Face is the same like I have had a shot of novocaine
                      I twitched all over for couple weeks
                      Mild dizziness which worsened with head movement
                      Tingling in both hands slightly
June 2007 had mri of brain and whole spine without contrast, all clear on 1 1.5 telsa machine
December 2007 had repeat mri on 1.5 machine all clear
Jan 2008 had mri done with contrast all clear
Jan 2008 had negative L.P.

My first neuro told me its not ms due to the clear mri and she doesn't know whats wrong with me

Today I am dizzy 24/7 mildly
Even if I hold my head still I'm still dizzy
To move eyes makes me dizzy it just never goes away.
My feet are still numbish underneath, my feet and ankles burn, my back burns when I'm moving about.
My ears feels clogged and itch a lot, I sometimes feel like there is water in them
I feel like my ears need to pop, like when your on a plane

If I get into a hot car my feet tingle.
I am due to go for repeat mri with a 3 telsa machine, and am too worried as I'm afraid it will show ms or not show anything.

I know these are all ms symptons and I know ms symptons worsen in the heat.

I'm female and almost 37 years old

What are the chances of this still being ms with 2 clear mri's so far and a neg L.P.

I also recall having face pain and burning feet and dizzy feelings before years before having the 2007 mri's.

If it was ms wouldn't it have showed up on mri by now?????????

Will appreciate any feedback,

Melissa

[Melissa072]

Too make more sense and make question shorter, what would my chances of still having ms with  clear mri's and a negative L.P. still be?

Could it be that if I still have ms it is only early and isn't showing up on mri, or would it be more likeley that its something else giving me my symptons?

Thanks again,

Melissa

[Melissa072]

Thank you for taking the time to post back.

Yes being in limboland is horrible and very frustrating, I have ms on my mind 24/7.

My current neuro wants me to have 6 monthly mri's and told me possible ms as everything else has been ruled out.

I am way overdue for repeat mri, am too scared to go get one, and have the attitude while I feel fine, I'm not going to bother.

But I have had the face pain before on about 6 occasions, and foot burning and very slight dizziness.......

But you still think it maybe isnt ms???????

And with my negative mri's and negative L.P. that would also make ms very unlikely wouldn't it?

What would my chances be of having ms still with all clear tests?

Thanks again for taking the time to post back.

Melissa

[Dr. Daniel Kantor, MD]

I understand your feelings of being in limbo, but thus far nothing in your post suggests MS.

Your testing is negative for MS and your symptoms are not specific for MS (many other conditions may cause these same symptoms, but the MS community is so vocal and intelligent, that when you search your symptoms online, I am sure MS appears in the results).

Most neurologic symptoms worsen in heat -- not just MS. Older people with stroke is a great example.

I recommend woking closely with your neurologist and an otorhinolaryngologist (ENT) and even a neuro-otologist (an ENT who specializes in the nerves).