Possibly MS? No diagnosis...

[carylsuzanne]

I am 39 year old female with high blood pressure, and Reynaud's Syndrome, my left ventricle is enlarged and my mytral and cuspid valves regurgitate  and interrestingly enough I have an incomplete Circle of Willis. I have been having numbness, pain, tingling bizzarre sensations, muscle spasms and twitches, in my face and arms and legs, visual disturbances, weakness, fatigue ... I feel like my legs are asleep or I'm walking in water sometimes...I feel like my skull is being crushed or like my face will explode....also like things are crawling on my cheak and ear...sometimes like my left eye is being pushed closed...at times it feels like my brain is vibrating.... my hands shake at times when I try to pick up things or hold things....my feet are always tingling....this has been going on for the past year and a half. I have gone to neurologists who found lesions on both sides of my brain but none on my spine. MS was suspected but No oncological bands were found at Spinal tap but IGG index was elevated. All test for the usual suspects of Lupis, Lyme disease and all others were negative. EEG normal, EMG normal, CT Angiogram normal...I went to an MS Specialist who didn't even want to take the time to look at my chart...and told me that I just wasn't sleeping the "right" way and prescribed muscle relaxers which did not help. My question is what is this? I have lost my job and health insurance along with is for being unable to keep up with my work and because I can't function at times...
I have no answers....All I have gotten is "Sometimes we just don't know" .
What should I do?

[carylsuzanne]

As for your suggestion about asking the neuroligist to start me on MS medication... I don't have health insurance right now and have heard that soem of the MS meds are avour 1,000  month...
I have been hesitant to even call while uninsured because even just an office visit to a neuro is over 400.00.
But I really appreciate your help.
CarylSuzanne

[Abhijeet Deshmukh, MD]

Hello.

Can you ask your Neurologist to start you on MS medication? You don't need an MS specialist, especially when he is not cooperative.

All your symptoms and the MRI picture and the CSF examination does hint strongly towards MS. And if all other diseases are ruled out, there is no point in wasting time to start therapy.

I hope you find your answers soon.

Regards

[patsy10]

My experience with an MS specialist was very similar, basically a waste of time.  I know you had a negative lyme test.  I just wanted to let you know that lyme testing is completely inaccurate.  You can have it and test negative.  Not saying you have it but you may want to do some research on it.