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Old 02-08-2008, 08:18 AM #20
shalynn shalynn is offline
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Join Date: Feb 2008
Location: Lower Ohio Valley
Posts: 118
15 yr Member
shalynn shalynn is offline
Member
 
Join Date: Feb 2008
Location: Lower Ohio Valley
Posts: 118
15 yr Member
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I am sorry for what you are going through. I do agree that having a neuropsych evaluation would be helpful. That testing will show if any of your sx are related to an underlying psychological disorder. Also, it can show if you do have true cog problems that are similar to those found in MS.

You sound a lot like I did four years ago. I know it is scary to feel horrible, and to not know why. I went to doctor after doctor looking for answers. For me, it took more than a half dozen doctors before I found one who would help me.

You may have heard my story before, but I'll share it again just in case. I have four lesions in my brain, abnormal neuropsych eval (profound losses in short term memory, information processing, etc), abnormal urodynamics testing showing neurogenic bladder, ENG showing Central Nervous system dysfunction, a history of several attacks, and an abnormal neuro exam.

I have all of this and still don't have a dx. Three years ago, I would have been(was) a basket case. But, now I'm not. What has made the difference, and this is what I think all limboers need, is having a doctor who cares. My current neuro is willing to treat my sx, runs tests when appropriate, and sees me every 3 to 6 months.

For me, once I knew I had a doctor who believed in me, and wasn't put off by the hard to dx sx I could let some of that "gotta know now" go. I realized that I could not make them dx me. I could only try and get the best medical care possible. You have to advocate for yourself.

My current neuro says I either have MS (in fact if my last MRI would have shown one more lesion she would have made the dx), a post viral illness(encephalomyelitis), or problems stemming from my copper deficiency (she's the first doctor to check for that).

Hang in there. Don't give up advocating for yourself. Sometimes it takes a team of doctors to get to the bottom of things too (I have a urologist, Rheumatologist, Neurologist, and an ENT).

Oh, also, it might not be a bad idea to have a Physical and occupational therapy evaluation. Sometimes they pick up on things that the neuros don't in their (sometimes quick) office exams.

Good luck!
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