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Old 02-06-2012, 02:49 AM
jemjeff10 jemjeff10 is offline
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Join Date: Nov 2010
Location: lowell massachusetts
Posts: 14
10 yr Member
jemjeff10 jemjeff10 is offline
Junior Member
 
Join Date: Nov 2010
Location: lowell massachusetts
Posts: 14
10 yr Member
Default replyfrom jemjeff

Quote:
Originally Posted by Mariel View Post
I have assumed that my foot neuropathy is "mostly" due to my more recent dx, Polycythemia Vera. But I've been reading more on various sites for PV, and especially reading the comments of specialists such as Jerry Spivak of Johns Hopkins and Ruben Mesa of Mayo Scottsdale. Dr. Spivak says this foot burning thing can come from other diseases which the patient also has, such as MS!
Or from diabetes.

when my primary dx was MS years ago, I had no foot burning. I had slight
numbness in the feet which I compensated for well. I know that I had lots of
neuropathy affecting various parts of the body, including intestinal spasm which I ascribe now to neuropathy. Our typical MS "ostipation" could easily be due to
neuropathy. After all, our disease is one of "nerves" or "neuro". It was not until my platelets started to rise with Polycythemia Vera that the minor numbness turned into pain, and then five years later, severe disabling pain.
Some days I can walk well enough to shop or do housework (some of it done
from the wheelchair), some days I have to give up and splat on the couch to watch the propaganda on the television and try to discern which of it might be true (kind of like trying to get a neurological dx).

My foot pain does NOT respond to aspirin, which means that I may not have
the Erythromelalgia of Polycythemia Vera; also the doctors say my circulation is too good for Erythromelalgia, but I think I might have poor circulation just in the hurting toes.

So I remembered that the MS forum people have lots of pain. (contrary to
some neuros expectations). Do you have it specifically in foot neuropathy--
burning, sometimes stabbing, needing pain medication much of the time?

Thanks for responding. And hugs to all who have pain.

Mariel
hello mareil wow I have that same pain my feet burn and feel like i jumped from the empire state building ! I had other symtoms that gave me the idea that i may have ms i have had this for a long time i had to quit working because of it my left leg has these lightning bolt pain ache burn my doc said i have meralgia paraesthetica a pinched nerve that is causing the leg pain but over the years i have lost the strenth in my left side it has weakend me ! I am type 2 diabetic and i hate it I got so disabled from my pain its auwfull I really think that this is gonna get worst to the point that i will need a wheel chair I just have lost strenth from all this stuff going on I had some stomach cancer had a tumor removed and i am cancer free I was glad i had that colonoscopy done cause i had a rare form of cancer in my belly they took out a tumor so what esle is next good luck any ideas on getting my pain down let me know I have taken my alpha lipoic acid suppliments and b-12 leichen.enchineacha.turmeric. i take neurontin meds asprin.and i am still in pain all day thinkin about TENS treatment nest
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