Denervation/Reinnervation

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kman543210

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I've tried to read up on these two terms, and the doctors have been no help. I have had 3 neuros and 7 EMGs. One neuro who was a DO, one ALS specialist, and a team of neuros at the Mayo Clinic just this last September. They all see the same thing in my legs and arms: evidence of reinnervation but no denervation, so they all have said I do not have ALS but probably peripheral neuropathy. My question is does anyone understand how you can have reinnervation without denervation. Does that mean the motor nerves are being damaged but not dying off? There is also dysphagia and reduced pulmonary function involved (FVC went from 73% in September to 58% about 3 weeks ago). I've given up on a diagnosis, but I just want to at least understand what is happening to my motor nerves, and like I said, the doctors do not take the time to explain anything to me. Thanks.
 

ohioprof

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You are correct in that you do have to have denervation to have reinervation . . . however, with ALS, the denervation will "win-out" and reinervation will cease. So if they see evidence of reinervation, then you probably do have some type of neuropathy and not ALS. You should still insist on a more definite diagnosis, so you know what you're dealing with . . . but it doesn't sound life threatening to me.
 

patricia1

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You are correct in that you do have to have denervation to have reinervation . . . however, with ALS, the denervation will "win-out" and reinervation will cease. So if they see evidence of reinervation, then you probably do have some type of neuropathy and not ALS. You should still insist on a more definite diagnosis, so you know what you're dealing with . . . but it doesn't sound life threatening to me.
I have been diagnosed with ALS 3 years with symptoms 9 years. Yesterday I had my 6th EMG my neuro felt its been 2 years and my progress is slow. She put on script ALS vs Mulitfocal Mysthasia Gravis. I was told that I didnt have enought denervation to indicate ALS and some evidence of mg I am so confused. She said there wasnt much of a change in two years I think that its up to the way the test is done ,and how experience the tech is. Mine was a fellow in the hospital and I think she wasnt sure what she was doing I am waiing for my neuo to call Pat:confused:
 

lovelily

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I had something called "collateral spouting" found on my muscle biopsy. I think this is when the muscles are "reinnervating"....which the doctor assured me was a good thing.
 

mamaoftwo

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Lovelily - your post never came up or else I missed it re my question on poly vs ALS diagnosis.
 

vmd

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Patricia:

All things considered, it sounds like good news, then. Your symptoms do seem to be unique insofar as you have many bulbar symptoms, yet slow progression.
 

patricia1

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Hi VMD Yes I know But like I said before What if they missed something and now its too late to fix Pat
 

lovelily

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mama,

the moderators never posted it. maybe they got backed up.
 
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