After my Father passed away, we asked for an autopsy report to determine what was wrong with him. We have since been informed that it was a very rare, incurable disease called Adult Poly Glucosan Body Disease; linked here http://ghr.nlm.nih.gov/condition/adult-polyglucosan-body-disease Do you thing a paleo diet would make an impact on disease progression? I don't understand much of what is written myself, but I do see a lot about glucose, sugar, glycogen... leading me to believe that is I reduce the sugar load, perhaps things could be managed? Again... I don't know much in this area.
asked byHamHock (284)
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on November 12, 2011
at 03:36 PM
I have actually seen this disease twice in my career. I did sural nerve and gastocnemius biopsies for their diagnosis. It is a mixed Upper and lower motor neuron disease similar in presentation to ALS but not as severe. I would tell you to read my series on CTE and excitotoxins to get more insight on what you might consider to do to mitigate the symptoms of the disease. It is a genetic disease that is autosomal recessive disease. It usually causes a neurogenic bladder and major sexual functioning issues.
The neurologist on these cases had no answers for the patients but did tell both to eliminate all grains and all excitotoxins to limit the effects of the disease. I believe it effects a GBE1 gene. This is a glycogen branching enzyme gene that really ruins muscle and enteric plexi of nerves in the body.
The last guy I biopsied had a 12 can a day habit of diet coke. I told him I thought that was a real bad idea.
on April 13, 2013
at 12:23 AM
I've read that you dont necessarily have to have the GBE gene especially if your of Italian decent. I had a fresh muscle biopsy in detroit a few years ago in which the pathologist reported and confirmed I had Adult Polyglucosan Body disease. I even called him after to make sure he was positive about this diagnosis. There isn't a Doctor in my area who has a clue about this disease. I live everyday not knowing what's wrong with me.Is there any information out there from a Doctor who is willing to help me with my symptoms and support my physical and mental well being. Thank you for your time, Janet Harbey 196 High Meadow Dr. West Spring Field Ma. 01089 413-746-9270 [email protected]