Confused after reading neuro's notes

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jschex

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I recently asked for and read through my neuro's case notes on me, which confused me more than ever about what my diagnosed may, or may not be. Let me preempt this comment by saying he's triple board certified in Neurology, Neuromuscular medicine and Immunology. His notes state:
"CSF showed high protein and the NCS/EMG showed evidence of MMN with CB. Progressive paresis, dysthesias with combined UMN and LMN signs. Demyelinating disease of the CNS and PNS (MMNCB)."
I was originally diagnosed with Transverse myelitis (spinal cord) and then CIDP. I have lesions in both. But, I'm completely confused about why he's calling this MMN if I have both UMN and LMN signs. I have spent nearly three years on Ivig, which works, but now seems to be losing effectiveness. And, I have had one dose of Rituxan which was a miracle for about a month then I slid back downhill. Thoughts? Anyone?
 

jschex

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Sorry for any typos. I have very limited feeling in my fingers. Typing isn't great.
 

Nikki J

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I would call or email and ask. It is a very valid question. I think the diagnosis of MMN allows some minimal umn findings ( hyperreflexia maybe?) but not sure
 
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jschex

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I have hyper reflexes in both legs. I was on IVIG monthly, but now I am at biweekly and cannot go longer. We've tried twice to push the infusions back out to a month and both times I wound up right back in a wheelchair.
 

affected

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It would seem to me that you need to make an appointment with this highly qualified neurologist and ask to have it all explained clearly. You have every right to do this.

I think that people should be able to access their medical records, but I think that people must understand that they will need the doctor to explain their notes to them as you are not a neurologist and I am not. No one can explain his own notes better than he can.
 
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