Your age for the onset of Neuropathy
 

I am told that Neuropathy is usually something seen in older people. I am 46 years old. Are there many people out there that are Under 55 with Neuropathy. It's very lonely not having people to talk to about this that understand what you are going through.

Hi Julie
 

Mine started at 43 (7 years ago) - so dont feel lonely - we have members of all ages.... and with neuropathy from many different causes, so welcome!

What type of neuropathy do you have, etc?

I was in my 40s when began to be seriously affected by B12 deficiency damage to my spinal cord.

One of the reasons people go undiagnosed with this condition is the myth that only elderly people are affected by malabsorption. I know people in their twenties and thirties when severely damaged.

In some people the symptoms and signs masquerade as peripheral neuropathy until the central nervous system has been damaged and is worsening.

rose

started at 46, I'm now 56. So I'm another that doesn't fit the description of this idiopathic thing being a disease of older adults. It only makes me think there was a reason that has never been elucidated.

It is believed to be caused from a Vitamine B6 defeciency. We are trying to get a balance of this Vitamine, but my body seems to be very sensitive. We went from being defecient to Toxic by only taking 50 mg. a day. I am taking 25mg now and will re-test in a few weeks. In the past year and 1/2 My nueropathy has progressed from my toes all the way up my legs and in my hands with pain in my arms at times. Today was the first time I felt burning in my thighs. And all I can do today is cry.

I was 44 when i had my first PN symptom, a numb big toe. Sorry you are in pain today.

I have celiac disease and was suffering malabsorption--I wasn't yet gluten free when my carpal tunnel was diagnosed at 43 yrs old. Wasn't very long after that when my toes all went numb, the doctor told me it was the same nerve as my hands.

Now, a neurologist is telling me he doesn't think it is neuropathy, even though another doc has diagnosed it. I guess, soon we will know--testing in the next 2 weeks.

Tell us about yourself.
 

Hi Julie – sorry to hear you are in pain but I know many experienced people here will want to know more about the history of your peripheral neuropathy. What type of B6 vitamin you have been taking and what you mean by toxic.
What tests you have had done and whether you have seen a neurologist and what other drugs, vitamins or supplements you may be on. Please give answers to these matters here and you will receive help.
I wish you less pain – you have come to the right place. :)


Tony

I was 32 when mine came on.
 

It was a full body acute SF PN stemmed from an autoimmune attack.

Similar age
 

I was 58 when mine started, I'm now 62. Small Fiber Sensory Neuropathy from Sjogren's Syndrome.

I agree with Astra (Tony). Please tell us more about this B6 deficiency and toxicity.

Billye

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.

Gluten
 

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

Hopefully, we'll get Mrs. D to weigh in on this--
 

--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 :confused: just on 4 years ago.

Hi
 

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 :hug: 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?

Mine started at 45 I'm now 47
 

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

I guess I am the youngest so far...
 

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.

Mine started
 

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

I was
 

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

HI Julie, I'm 51 and my Neuropathy pain started in Feb. of this year and it has really changed my life! I've been on sick leave from work for 6 weeks now trying to get it all figured out......and I still haven't gotten it all figured out! LOL Roxie

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.

Roxie
 

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

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.

Age of Onset
 

Julie;

I was 50 when I had my first symptoms. It moved pretty fast from there. I had 3 tarsel tunnel operations that made things worse - really kicked up those nerves. Have had uncontrolled pain every day since October 23, 2004.

Nancy

P.S.
Feel free to send me a Private Message ("PM") anytime to talk about PN. I would be happy to hear from someone.

55 For Me
 

Since then, and two surgeries to remove "suspected" neuromas from my crummy feet. I live in a world of numb feet. I was told I would get used to it. To the contrary, I think about it constantly. Maybe, because the result of the surgery left me feet in just as much pain as preop pain. I went from stabbing, bunched up sock pain....to aching, numb bunched up sock pain. My life turned on a dime. Weight gain....depression....even though treated with meds. Doctor shopping...to the point of almost insane. Pain goes up and down like an elevator. But....what can one do? Just have to try and coexist with this little daily reminder of....my feet aren't what they used to be.

I have diabetes type II.

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

Michelle

I'm 35 with PN
 

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.