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Old Fri Apr 15, 2016, 09:09 AM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,409
Hi Cheryl,

So sorry you have deal with PN. Even though John doesn't have MDS, he was hit hard by peripheral neuropathy. Much of what I learned about nutrition was because of his PN, which coincidently was relevant to his blood disorder.

Whether or not it's permanent depends on the cause. John's was really bad. In the beginning, if you asked him on a scale of 1 -10 the pain level, it was about an 8 or 9. He was miserable. It took a lot of research and multiple approaches to get him to where he is now which would be around 1 -2. Sometimes, it's just a matter of time and the nerves recover on their own. Today, his feet are close to normal but I don't think the nerves will ever fully recover. His feet get really hot quickly so summer time is the most uncomfortable time for him.

He too had shingles but the PN was present before the shingles. I would say that it makes it worse for a while.

So many things can cause or contribute to PN. Toxic damage from medicines or alcohol, illnesses, autoimmune issues, nutritional insufficiencies, structural problems, thyroid issues, mitochondrial damage.... just to name a few.

If possible, try to figure out if the trigger was the shingles or if it was the viral infection or the medicines you were on while in the hospital. It may then provide a clue as to potential strategies you may want to explore. The only other thing worth mentioning since you do have MDS, is to look into the MGUS protein if it continues or progresses. Usually, with MGUS, it's bilateral damage so this would not be high on my list to check out at this point since yours is just on the left side.

http://www.ncbi.nlm.nih.gov/pubmed/1656848

If you are interested on the nutritional aspects of treating PN, let me know.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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