MS or other rare disease?

I have had back pain for no apparent reason starting in March. A month later, I was developing numbness, tingling and pins and needles sensation in my hands and feet. These symptoms continued and progressed into my arms and legs. I also noticed that I would tire while blow drying my hair. I had to rest several times before getting my hair dry. Making dinner has been difficult because I get so tired and have to rest. In June, I had a stroke-like episode, but no clot or hemorraging. This episode was marked by several TIA's and temporary blindness in my left eye before I went unconscious for 2-3 hours. When I awoke, I couldn't remember what had happened. I was treated for a headache!?

After this, I had these exacerbations that would start out by lasting from seconds to minutes where I would feel so exhausted, have ripping and tearing pain, numbness/tingling, dizziness and difficulty speaking (words were mixed up). My feet were so numb that I couldn't feel pain. i would cut my feet on something that I walked into, but until the pain wore off, I wouldn't feel the wet blood or the pain from the cut.

Starting in July, I couldn't remember things or people, had dizziness and ripping, tearing and burning pain primarily in my arms. My vision was off and on blurry or double. I went to see a neurologist who performed the scans and bloodwork, emg's, etc., but nothing was medically wrong with me. The EMG showed skin sensation and visual disturbance with limb pain. He did give me Neurotin (sp?) but it made my current symptoms worse and created new symptoms like terrible foot spasms that make my feet curl under, fatigue that got worse in hot weather, and weakness in my hands slowly progressing to my entire body. The exacerbations increased from minutes, and now lasted up to 6 days. These exacerbations included muscle spasms happening in various spots on my legs. I thought i had it figured out when these exacerbations would occur - but with each set of new symptoms, the time when these things happen are unpredictable. They used to come in the mid-afternoon and last for 1-2 hours. I've had them last off and on throughout the day. Now the spasms and numbness get worse between 7pm-11pm.

In the last month. the burning has developed into my spinal cord area. My symptoms are so severe that they have kept me up for days and nights at a time. I asked my neuro to give me something for the pain or to help me sleep, but he refuses. I finally asked a young PCP if he could at least prescribe me something for the pain, but he gave me anti-anxiety meds instead and called it a sleeping pill. They too didn't work and he thought then that I might be bi-polar?? Told him I was tested for mental illness twice and there was nothing. Finally, he gave me Lyrica a couple days ago and that seems to be helping. Then he told me I might have MS?

My neuro @ Guilford Neurologic tells me 'nothing' is wrong with you! Well, what I wrote above certainly isn't nothing. I would like to know if there are other rare diseases that mimic MS or if this is the beginning of MS? Please tell me your thoughts. It would also be great to get a referral to another neurologist within a 2-3 hour drive of Greensboro, NC.

[Lulu54]

Your symptoms sound so neurological to me, but I am not a doctor, so what do  I know?  

Actually I know a lot and it sounds like your doctor has no explanation so he played the psychological trump card.   He must be nuts!   To get that one off the table, maybe you will have to be tested again, but twice should be enough.  

I would look for an MS specialist - not just a general neuro.  Find one you like and ask that doctor to stick with you until the answers are found for your problems.

The Consortium of MS Centers ( well respected, well trained folks!) has an online directory of their member centers

http://www.mscare.org/cmsc/index.php?option=com_center_directory&Itemid=528

You should look there for a center.

Most of these places will not take you without a referral from your primary care physcian, but you can call and ask.  

I hope this helps.

welcome to our community here - I hope we will see you around more while you search.

be well,
Lulu

[therapist34]

Hi Lulu,

Thank you for the info on the websites. Turns out my 2nd opinion neuro is listed in the Consortium  and he was listed as having the highest percentage of satisfied customers!

I appreciate your opinion on my symptoms as well as your support. Some days, I think, I don't think I have MS, but then I get a reality check.

:-)  Julie

[Lulu54]

Shoot Julie,  lots of days I think I don't have MS and I've been dx'd for over a year now...  one thing about this disease is it will give you reality checks just when you least expect it.

Good luck with the next neuro - you definitely want to see one that has experience with MS  (and lots of training).

good luck and let us know how it goes.
Lulu