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.

Mine started around 31-32 yrs old. But then mine is connected to my thyroid functions. Started as carpal tunnel, spread to feet and was most severe after my son was born (34). Started thyroid treatment "finally" in early 50's, and feet improved, carpal tunnel almost gone. Now I am sinking again, metabolically.
I do not have progression past the ankles. Sometimes I get body burning now, with viral infections/colds etc. I am almost 61 now.

in 2000. I was diagnosed in 2001. I just turned 37 last week.

formally diagnosed w/ painful axonal idiopathic neuropathy about 2 1/2 years ago but I was symptomatic for many years before that - didn't have the painful aspects back then so I didn't pursue it as vigorously as I should have. I just entered my 7th decade (60) so I'm a little older than many who struggle w/ the symptoms.

You'll find a wealth of information, empathy and compassion here so even on your down days you can get somewhat of a "pick-me-up" at this forum.

Sorry you're feeling so bad but I hope betters days await you.

Alkymst

My dad started complaining of numb feet in his forties. We didn't think of it as a disease, but as a normal result of him being on his feet all day (he owned a grocery) for long hours six days a week. He never had pain, and is now 95 yrs old!

I was 51 when the PN started. After a cold and grueling winter backpack trip in the local high desert (Santa Rosa Wilderness) my feet started itching. I applied fungicide and thought it would get better in a week or so. Instead, the itching spread, and turned to intense and debilitating aching pain between the metatarsal heads, burning, electric shock feelings that prevented sleep, extreme skin sensitivity, and other areas of the skin being totally numb.

I went through three abusive and derisive doctors before finally getting a neurological referral. The neurologist gave no cause and no hope, but at least it now had a name, so my wife didn't think I was crazy like those jerk physicians did.

The worst thing back then, besides having PN and not being able to run and backpack was the isolation and fear. Doctors were no help and there was nobody to turn to for help or advise. The first help was reading Dr. Wiel's book, "Spontaneous Healing". That inspired me. I tried acupuncture and Chinese herbs (no help), then Ayengar yoga which gave me my balance back and started restoring ankle and leg reflexes.

The MGH forum before the previous one was a wonderful thing for me. The isolation was over, and much of the fear as we learned from each other. The first other person I met with PN was Liza Jane on our second trip to New York after corresponding with her in the old forum. The experience was empowering and electrifying for both of us, the start of a deep friendship to this day.

If you didn't include the area you live in your profile, adding that can create possibilities for friendship and for getting advise for doctors etc.

I've looked for posts to find out what you have going on and found this:

I'm Roxie and I just found this site.
I have just been diagnosed with Neuropathy Myopathy by my Rheumatologist after having a (very painful) nerve/muscle biopsy. I have been having severe pain in my arms, shoulders, hands, legs and hips since early Feb. of this year.
I've had MANY MRI's, Cat Scans and blood work that was to no avail other than to show I have low Carnatine level in my system...so I'm taking supplements now. I'm not Diabetic. My Rheum. is now trying to narrow down what I have through blood work. I'm taking Lyrica for the nerve pain though it's not working real well. I've tried Neurontin and it didn't work well either. My doctor mentioned a weekly IV that might be an option but after reading about it, it doesn't sound like a good option. (has anyone tried that??) I'd love to hear from anyone with ideas, suggestions etc......
I also suffer from Barrett's Esophagus, Interstatial Cystitis and Irritable Bowel Syndrome and Osteo Arthritis.
Thanks! Roxie

I have some questions for you: what tests have you had and what EXACTLY do they show? Myopathy/neuropathy is not a diagnosis. if you have myopathy, it has a cause; same with neuropathy. Both need to be investigated.

Carnitine deficiency is one of the few things which causes both, and if this is what you truly have, you have a mitochondrial disorder, and I'd suggest you visit a group for that. But defintiely google on carnitine deficiency to leaern more. It's not necessarily a minor thing.

As you might know if you've read the stickies, I've posted a site, www.lizajane.org, which lists ALL the tests which must be done to be sure a proper diagnosis is made. Please get ahold of all your results and fill them in on the charts, so we can all see what is going with you.

But you ought to know, "except to show a carnitine deficiency" is not a minor finding. And the carnitine you take for replacement may not be doing the trick. What are your latest blood levels?

For instance, I keep track of my levels now, as I realize now that going off the carnitine had a major impact on me, and I have to get them up again:

..................................7/14/2004....... 9/13/2004.........4/26/2007
Total Carnitine...34-67 ...... 46 ................ 34 .............. 26
Free Carnitine...25-54 ..... 35............. ......31..................22
Carnitine Ester...3.8-19............................. 3 ........... 4

I'm not good at getting columns to line up here, so they might not show well, but you can see that it's possible to track your levels. The 2004 bloods were during replacement, then I gradually decreased and stopped, so I'm abnormal again. It was a dumn thing to not realize how important this was.

Also, if you're carnitine deficient, it is VERY important to take at least 100mg of CoQ10 from just about everything I've read. Please read the support groups and make your own decision there. But tell us more so we can help you in other ways also.

http://www.emedicine.com/ped/topic321.htm

I have diabetes type II.

I've been suffering with neuropothy since I was 48. I am now 51.

Michelle

I have been suffering from weakness in my arms and legs for several years now. It started in my arms about 4 years ago and it did not alarm me until I started limping on my right foot about two years ago. I went to different doctors for awhile with no one telling me anything until I became pregnant with my first child. My neurologist at the time called me into his office with my husband and told me that I probably had ALS. 9 months later I had a perfect pregnancy and gave birth to a baby girl and I am still walking.

The baby was born August 2006. In October 2006 I started IVIG therapy and it has been helping with my fatigue and weakness a little.

I finally received a final diagnosis of CIDP from the neurologist I go to now. Everything is a lot more difficult to do and it is so frustrating not to have the energy or strength at this time in my life. Things do look up though. You have to remain positive and get as much information about your illness as possible. It is important to try to help yourself. This community is very helpful. I find that my neurologist is the last person I can discuss things with.

Thanks at the moment since I may have other issues not just the pn dx as I have new symptoms were not sure. Were thinking some may be related to a past of a severe ed though now better with that there is sometimes irreversable damage or slowing healing. I'm sorry for your pain too cause no matter the age its a hard battle.