I was 50 when I developed idiopathic painful sensory PN, emphasis on the painful. Julie, hang in there. We all have an idea of what you are going through. I am so sorry you are having so much pain. I know you must be scared, too. Stick with this board and you will find many understanding friends and help also. I am leaving tomorrow for a 3 week vacation, but will be interested to see how you are doing when I return. In the meantime, since I am from the Bible Belt, I will be praying for your pain to lessen.

After reading "Peripheral Neuropathy when the numbness, weakness, and pain won't stop" I think I have had PN for at least 10 years. About a year and a half ago I went to my doctor. He sent me to a nuerologist who has ran many many Blood tests, several MRI's (the brain and spine), and a Spinal Tap. About a year ago they found literally no Vitamine B6 in my system even though I was taking a prenatal vitamine everyday that included a couple mgs. I take those for extra Iron because I seem to always be low in Iron. Everything else checked out okay except that the MRI's showed some mini strokes. My nuerologist had me start taking an over the counter Vitamine B6 50mg tablet. 6 months later I had another blood test and it showed my B6 was a little high. But they never followed up on it. A couple of weeks ago my new nuerologist noticed it in my records and had me tested and said it is too high. He didn't give me any numbers. Ask me to cut my tablet in half and said my body is too sensitive to this vitamine.

Before all of this, I was taking Paxil for depression. I have been switched to Cymbalta. I have tried Neuronton, and Tegretol but am now on Lamictal to try to help the pain. The Lamictal isn't working yet. It is still too low of a dosage.

Hello,
I am new to this whole board so I am curious what "gluten free" means and what affect this has had on your PN
THanks!
John

--but it is possible that your sensitivity to B6 is secondary to other conditions, such as a hereditary enzymatic deficiency.

I do know that many of those who have reacted to higher doses of the standard pyridoxine form of B6 have done better with the P-5-P form, which has to jump through far fewer metabolic hoops to be utilized.

The other thing that came to mind, although this is a somewhat controversial topic in medicine--mainstream and alternative--is the possibility of pyroluria, which is considered to be a cousin to the neuropathy-causitive condition of porphyria. In this condition, abnormal hemoglobin synthesis causes excess B6and zinc to be excreted in the urine.

Take a look at:

http://jccglutenfree.googlepages.com/vitaminb6

from our own Cara, mistress of gluten sensitivity. Also:

The Wikipedia article on this actually summarizes the condition well, and makes note of the controversy as to whether it exists at all, and how it might be related to porphyria:

http://en.wikipedia.org/wiki/Pyroluria


BTW, I developed my neuropathy, which was/is acute, body-wide, burning, and exclusively sensory, at age 43--I'm 47 now.

I think the characterization of neuropathy as a disease only of older people is terribly misleading. There are many different types of neuropathy, and the conditions that lead to many of them, such as autoimmune processes or toxicities, can strike at any age. The neuropathies that are most common in the elderly are those that are cryptogenic, nerve length-dependent, and sensory, but these, while common, only account for a fraction of neuropathies. Even those due to diabetes are not confined to older people.

It wasn't long before i turned 50 years young it started on me, geez doesn't time go so quick just on 4 years ago.

I am so sorry your in pain,my mom and 2 sisters ,were in ther 80's and 1
now 91 just started complaing about the pins and burning in feet.
I'm 60 now and i was in my early 40's or maybe sooner when it all started.
don't know,i kept blaming it on everything else,i was a nurse i just don't
think i wanted it. My 29 yr. old son and wife take care of his sister-in-law
she's 30 went from cane and is now on walker. Hope you get some relief
soon,and plese keep posting,this is a wonderfull place with many caring
people here. Bless you Sue

I didn't get diagnosed until 50, but I had it a lot longer than that. I would say mid 40's. I am 54 now.

Hi. I'm 28 and have been dealing with this for 4 months. I hope if I ever find some relief and am more ut of bed I can start a support group for young people in pain. Its hard as most people my age can't realte to this bed ridden pain physically or mentally. This is a wonderful community and regardless of age we all relate so well to each other. I wish it was on a better note but sometimes I even get a laugh from many of you. Like you say that is the best med.

I am so sorry you have to experience this at your age. Do they know what is causing yours yet?

Sounds like the "average" age is mid to late 40's.