[Mariel]

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

[mrsD]

I would try magnesium lotion first. (I don't know what you can have orally)

Magnesium helps with the micro-circulation, which often is hard to test for.

Thick blood from polycythemia or from elevated antibody peptides tend to clog up the tiny vessels in the feet. Magnesium helps open those tiny ones and improves circulation.

A poster on PN found this new lotion, and I have been using it every night for my magnesium instead of oral and it works nicely.

http://www.cvs.com/CVSApp/catalog/sh...new_crumb=true

That would be the first thing and easiest to try.

Staying away from sugar and MSG also helps. Sugar raises triglyerides and they also clog up the vessels, because they are viscous.

[Lynn]

Hi Mariel

I sometimes get a burning sensation in my feet - sometime it travels from my right foot right up to my right thigh as well. It is very uncomfortable, and keeps me awake at night, but I have to say, compared to the pain you are in, I am really lucky - it is like rubbing sand into a case of really bad sunburn.

I hope that you find something that can relieve you.

Lyn

[Mariel]

Mrs.D, thanks for the tip on magnesium lotion. I have some magnesium lotion which I bought years ago and did not use because it was hard to get in the bath, where they wanted it to go. I will try it on my toes. I already take about 800-1000 units of magnesium by mouth. I was told to take it twenty three years ago by a neurologist, which I could not take the MS drugs for spasticity. Magnesium keeps my legs and lower back from jerking and spasming.

I eat little sugar and no MSG.

Thanks, and thanks Lynn for your comment too.

[mrsD]

If you take things by mouth, and the micro vessels are blocked in the feet, the oral things cannot reach where they need to go.

Epsom salt baths work well too. But this lotion is so much more effective for me at least...targeting problem areas. I'd put on the tops of the feet, and ankles too. I did my legs this morning before working outside, and it really helped.

If you use alot, you may be able to lower your oral intake instead.

[Dejibo]

I sometimes feel like I am standing on hot pavement with barefeet. its aawful!

[karilann]

[QUOTE=Lynn;774858]Hi Mariel

- it is like rubbing sand into a case of really bad sunburn.


This is a really good description of what I feel also. My doc suggested Lyrica, but I have stayed away from more drugs until I feel I can no longer stand it.
I just purchased the Epsom It foot lotion on Ebay for 17.99 with free shipping. Could not find it on CVS site. Other sites sell for 10.00 or so but shipping was high.

[mrsD]

Since this thread started, CVS has discontinued the wonderful
Epsom lotion! I was sooooo mad when I went in there and found that out!

Epsom-IT:
This location is affordable:
http://www.myfootshop.com/detail.asp?productid=899
$6.20 shipping for me.

Close to what you paid. I bought 3 bottles in my last visit to CVS..so this should last me a year or so. I find a little goes a long way for me.

[jemjeff10]

Originally Posted by Mariel

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

[jlay]

Originally Posted by Mariel

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

Hi Marie - I have foot problems that range from pins and needles, numbness,burning,freezzing to excruciating pain depending on what I'm doing and what kind of day or night I am having. Walking on tile feels like walking barefoot on a skating rink.I used to be constantly barefoot unless I absolutely had to where shoes. Now I always have to have something comfortable on my feet, usually lined slippers or plastic clogs with socks. I invested in a circulating foot bath with a heat control which I use with epsom salts. If I soak my feet in the foot spa for 20 minutes or so I find that it does help relieve the symptoms for a decent amount of time. I highly recommend it as well as always wearing something comfortable on your feet. Also, if there is someone around to help, a good foot massage helps with circulation, but sometimes it hurts too much for that. I hope you find some relief. John