Multiple Sclerosis (MS) Support Group

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Numbone 11/14/2009

I'm getting so frustrated! I've been experiencing numbness, pins and needles pain, heat sensitivity, vision problems and pain, weekness in arm and leg for 3 years now with no diagnosis. First the neurologist said that it was complex migraines. Now, a neurologist said that's not possible with my symptoms. I have had two normal head MRIs(last one in Feb.). The doctors won't do anymore tests and they don't know what it is. I'm having trouble keeping a job, because it seems like I have as many bad days as good ones. I'm unemployed right now and it's hard to find a job where I won't get hot(especially living in TN). I've gain 100lbs in the last 3 years due to inactivity and trouble walking with weakness and numbness in leg and foot, not to mention the heat issues. I have a wife and kids to support. I don't know what I'm gonna do. :(

deleted_user 11/14/2009

Maybe you need to find a Neuro that only treats MS...... I go to an MS Clinic here in WA state & all the Neuro are specialists in MS. See if you have a place like that near you in TN.
It seems someone could tell you something!!
Keep us informed!
-J

deleted_user 11/14/2009

I can imagine you have got to be totally frustrated! I agree with iamwoman...try to find a neurologist that specializes in MS or autoimmune diseases. I have heard from others that their MRI's appeared "clean" but their spinal tap showed the true story of MS or other neurological disease.

You need to get answers so you can go on with your life, not to mention treatment...

deleted_user 11/14/2009

Dear Numbone,

I'm new to this site and to the MS discussions. I just joined last week. I haven't officially been diagnosed with MS but I think I have it. My symptoms are: constant crawling sensations, tingling, burning sensations all over the body, and dizziness. I have pain in my hands and feet sometimes that come and go, and a kind of soreness in my joints in my wrists and fingers. This actually may be considered as weakness. When the neuro checks me he is constantly saying I am not experiencing any weakness in my arms or legs. I haven't yet passed out, fallen, or loss sensations, but I do experience shooting eye pain, and a type of weird sensation on the right temporal lobe of my head. All my MRI's (3-4) in two years have been normal, but that doesen't mean anything to me because I know doctors are not perfect. Please don't give up. Keep the faith in the mist of this terrible process of symptoms. I know its hard, but pray for strength and know that you are not alone in this. I can't tell you what my life has been like not knowing whats wrong with me and thinking that I have this or that and to find out that I don't have something. It puts a strain on you and your family. I'll be glad to correspond with you anytime.

AusSue 11/14/2009

I can understand your frustration. It took me 5 years took me 5 years to get from it was it was the hemiplegic migraines to yes I had ms. Imbetween I was told many other things it could be like fibromyalgia, lupus, tia etc. There are a lot of other diseases that mimic ms & it is often a matter of crossing out others first before you can get a dx.
If you are not happy with your neuro find another one. You need one that will listen to you.
Take care of yourself.

deleted_user 11/15/2009

I understand your frustration. Sometimes it's so hard to get someone to listen to you. Many MRI come out clean. Did you have one of your spine?

Perhaps you can find a neurologist that will do a lumbar puncture?

Numbone 11/15/2009

I have had 2 MRIs in 3 years. The last one showed an brain abnormality, but they "didn't think it was associated with MS". My symptoms are getting more aggressive and last longer. Thankfully I have times where I don't have symptoms at all for a few weeks. I wook up this morning with left side numbness and eye pain. I thought all neurologists knew everything about MS.

deleted_user 11/15/2009

did you have an mri on your neck and back?

my brain is like cottage cheese....so many lesions.....these my dr. is not so concerned with, but he is with the lesions at the base of my neck.

we have common symptoms. as others have said, an ms specialist is in order. my firt nuero stated my lumbar was normal. my ms dr flipped a wig over this.

i didn't find a new dr because i didn't trust the one i had. i found a new one because i don't like spending hours in a dr's office full of negative, grumpy people.

thank god for that!

peace,
katie

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