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lindal

Idiopathic brain pain

Posted by @lindal in Brain & Nervous System, Nov 13, 2011

I was diagnosed with this at Mayo in March of this year but basically no one knows what causes the bursts of pain. Sounds like electrical shock and then buzz then another, if they cluster I black out, tremors, weakness in limbs. Have had all tests possible all Drs agree they can see spots but no one knows why or what this means.

menville

Posted by @menville, Apr 3, 2012

You have similar symptoms to mine. There are so many moving/dysfunctional parts that it was hard for everyone to connect the dots. Everything seemed "idiopathic" but all are controlled by the central and autonomic nervous system. They eventually went with mononeutritis with cerebellar degeneration in my case.

lindal

Posted by @lindal, Apr 3, 2012

Thank you so much for your reply sometimes the worst is feeling like you are alone in this and no one who understands. I will look into the mononeutritis that you were diagnosed with, I had already been diagnosed with cerebellar degeneration also. I don't know about you but it seems like a lot of stress seems to worsen my symptoms. I am 56 sorry don't know how to put picture in will get my daughter to help me, sometimes if you can see someone it helps. I have been dealing with this for several years and went to lots of neurologists here, then eventually to mayo, I am in ky. Please feel free to post at any time it's helps to compare and not to feel alone even if you just need to vent thats ok too.

lindal

Posted by @lindal, Apr 3, 2012

Just looked up mononeutritis, bells went off, I have had 1 stroke and 2TIA 's and have numbness, tremors and restless leg also carpal tunnel and unsteady gate, pins and needles in hands and legs, this is so strange they had suspected MS. Have they mentioned that to you ?

menville

Posted by @menville, Apr 7, 2012

Yes. MS is on the table. When I was diagnosed w/ a neurogenic bladder by Mayo, thet immediately thought it was MS. However, a spinal tap didn't reveal any MS rings. So they keep monitoring until a new symptom comes up that will lead tthem in the right direction. i hope you get answers too. And yes, this can be a lonely world. But I can't say anything but great things about all my Mayo docs. Write me anytime.

lindal

Posted by @lindal, Apr 7, 2012

So nice of you to reply. I too had a spinal tap which showed no MS, but doctors said just because it didn't turn up then didn't mean I wasn't starting with it? Unfortunately I think they just havent hit upon what we have. It's funny they told me that they had a group of women with our symptoms but no answers. I agree everybody was great at Mayo and I certainly don't regret going there and they do keep in touch and make themselves very accessible to my doctors here. I will tell you one thing even though I have had a hysterectomy years ago they believe that estrogen patches might help pain and I believe that it does, I also take Tramadol (8) daily along with Valium and ambien and cymbalta the cymbalta helped with pain level and hydrocodon as needed, zofran to help me eat(I lost a lot of weight) no appetite. Just thought I would tell you what I was being treated with don't know if that helps or not. I want to wish you a Happy Easter and hope you have a pain free day or least a good day. Write anytime, Linda

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