Peripheral Neuropathy Online Support Group

i have dealt with p n for about 8 years now. it started with numbness between my right big toe and next one. i always thought it was a cut nerve were i had stepped on a beer bottle at the lake and almost bleed to death. which i did, was hit with glucose in emergency room and brought me back. seen the light. anyway it just kept spreading on my feet, right to left now in ankles and shoulder. i think it is getting to my stomach and digestion. maybe going down the spine. i found the best thing for it is marijuana. even if gabapentin kind of helps me sleep. but i found i sleep better with marijuana , but i do not dream with it.

I am now on 3600 mg a day of gabapentin and it helps a great deal but the burning itself is light during the day and a little more painful at night. But lets face it, the pain never really goes away. It is always there,always burning! Bah!

My neuropathy keeps spreading too. Started 4 years ago with numbness/tingling in my left forearm/hand/fingers. Ulnar nerve. At the same time, burning/numbness in left groin and ataxia in right wrist/hand and ankle/foot. Since then, has spread over 80% of my body. It's easier to say it has NOT affected my head, neck and shoulders. Yet.

Don't know why this happened ~ no trama ~ toxin maybe? Suspected alcohol but if alcohol, wouldn't progression stop when I quit drinking 4 years ago? Can't guess what other possible toxin. No unusual exposure to chemicals, no change in lifestyle or living arrangement. Lots and lots of stress though. But stress was removed 4 years ago so why continued progression? Don't know.

Post edited by: Mispati3, at: 07/24/2012 02:32 AM

3600 mgs of neurotin ? I thought the max dose was 2400 mgs My neurologist told me that I was on the max dose of neurotin of 2400 mgs ?? I smoke like a damn fool Iken It helps a great deal I would never put down the mmj now that I seen how much it does work. I have it in my spine as well and it shoots electrical down your spine ...

hi guys just got the diagnosis of neurogenic bladder as well as idiopathic sensory neuopathy anyone else???? Could this be lyrica (med) related, not having sensation of full bladder? Is this common with neuropathy? Also get bluish purple nail beds big toes and thumb nails intermittent and even when they are warm dont know if i have a circulation problem or if neuropathy can cause these problems.

This is only my opinion but I think where ever you have nerve endings you are going to have some sort of symptoms when you have pn. I have days when I don't have the urge to empty my bladder. I am not on lyrica so I think its the pn. It comes and goes though. Then there are days where I get "when I gotta go , I gotta go and fast like. " From one extreme to the other. I just wish this darn thing wouldn't make my feet feel like they are on fire.

i think the p n is effecting my bladder also, some times i have high pressure , sometimes i drip, with the high sugar who knows. i was in denver and it really went crazy, maybe it was attitude and being a dryer climate.

abby the purple at toes is not a good sign. i get hard nails and fungus in my nails, but had my blood pressure checked in my legs and it is still good. i think it is getting acupuncture in feet and spine help with this. i use a tens machine on my lumbar area to help with sending signals to my feet and legs.

mispati i have ed and know it is spreading over my groin area. it effects my lumbar and bladder, also digestion, all this having problems with tension in spine, from ptsd i think. how does it effect women? ed for men. does it effect women sort of same way? i have never heard how it effects women.

cat i was feeling the pain even with the marijuana, but if you need relieve it will take pain away for a while. until it wears off. it is very relaxing. when you eat it it works better for body, if smoked more of a head high. i wonder why people so against it mostly the gov't... what they say about it is pure crap. mostly likely it is big pharmco and lobby money,, it is always about money not people .

Post edited by: lken, at: 07/25/2012 08:03 AM

Post edited by: lken, at: 07/25/2012 08:06 AM

@ Iken: Without going into too much detail, it's the same in my groin area as with other parts of my body affected by PN. Numbness, tingling, decreased feeling of sensation, etc. I can no longer achieve an orgasm. I also have the same bladder problems the rest of you seem to have. I imagine it's all related.

well i seem to be better off in mornings or when i take a nap. in mornings i wonder if it is pressure on prostate gland, i get erection , i just wonder why i do not get erection when sexually stimulated. when i take a nap it seems to be there and i feel good. but that is it. much be something to this. i just wonder if is a physical thing or just bad signaling from brain to groin.

Post edited by: lken, at: 07/28/2012 06:55 AM

Well hells bells! I too have had a problem urinating. My bladder is full and I feel the intense need to go but when I do, nothing happens but a dribble and then stops. I feel I have to really relax to finally go. I even dreamed about it one night ( don't laugh)that I had to go and I woke up and went to the bathroom and I could not go. I stayed in there quite a while before I finally went. This has happened more and more although it has not hurt, other than sitting on the pot longer.

I hope this is not a new trend. Could it be the gabapentin? Yes my nuero and pharm gal both told me 3600 a day was ok, but it is the max I can safely take. Believe me I could never go back to 2400 or less than 3600. Yet it is only a small improvement, because the burning does not go away!

Aric