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Old 03-19-2010, 12:16 AM #71
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Smile peripheral neuropathy

I have PN and am 46. Mine is from disc in my cervical spine that are pushing on nerves and disc in my lumbar spine along with spinal stenosis that are pushing on nerves. It can be very painful at times. I take amatriptyline 75mg every night it has helped me very much with the nerve pain in my arms and hands at night.

i have a lot of muscle spasms in my legs, i lose all feeling in my legs and feet when i walk very far. I have started using a cane because i feel so unstable at times.

I do not have insurance and i have been denied disability but have not stopped trying. i have a hearing sometime this spring or summer coming up again.

Its an awful feeling to have this.And feeling like i am never going to be able to get any help.
i get really discouraged with it all at times.

it feels good to just see others here who do understand.
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Old 06-04-2011, 11:52 PM #72
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Thought I should update this thread I started.
PN has now progressed into my hands. Problems with temperature control & holding on to things. Trying to do up buttons is awkward. Still no pain fortunatly. Don't know if that is a result of taking the B12 but are not going to stop just to find out. In fact are going to up the dose from 1000 to 5000 & see if it helps.
During the latest tests they found I had prostate cancer so had to get that chopped out last year. Now any woman is safe to be with me.
Just sitting here on my hands pondering what to write next.
Once I got the all clear from the cancer, my wife & I started a new business which keeps me busy & takes my mind off my problems. So I will chug away at that as long as my health permits. I know, if I just gave up & sat around feeling sorry for myself, then I would probably go down hill rapidly.
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Old 08-31-2011, 12:28 PM #73
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Default LYRICA for Neuropathy

I have been diagnosed with Idiotatic peripheral neuropathy about 4 years ago. I have numbness in my feet and a heavy burning sensation from my feet up to my knees. My doctors have given me all the tests but nothing indicates why I have this condition. Last year he tried me on gabapentin. I was on an average dose for 8 months and it did absolutely nothing to relieve my pain. I discontinued taking that medication. A few months ago he started me on Lyrica and I felt almost immediate relief. I take 3 50mg tablets a day and I can honestly say about 70% of the burning sensation is gone. However, I still have the numbness in my feet. Nothing seems to work for that. As far as I am concerned I am very pleased with the relief I get with Lyrica. I wish it gave me more relief - i.e. my numbness, but it is definitely better than no relief at all. You might want to discuss Lyrica with your doctor.
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Old 09-01-2011, 06:58 AM #74
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I've been diagnosed with Idiopathic progressive neuropathy. I have lost about 80% feeling in my feet and am starting to have symptoms in my hands. The tips of my fingers feel like there are callouses on them and am starting to fumble with things. Walking on uneven ground can be crazy at times and embarrassing at others. The thing that most concerns me is the term progressive. I'm scared that it may move at an aggressive rate and I won't be able to enjoy time with my son (age 2) as I have with my 2 older daughters (ages 15 and 11). Time will only tell.....
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Old 09-03-2011, 04:05 AM #75
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Hi everyone. I have also been diagnosed with a idiopathic peripheral neuropathy. Im a 22 year old male from Sydney Australia.

I have tingling and electricity feelings going down my spine and paresthesias over my arms and legs with hot and cold alternating at times.

I just wanted to post so i can talk to others with this same problem.

My life kind of sucks at times, i have little friends and mostly keep to myself and family.

A lot of the times these symptoms make me extremely ****** off and agitated sorry to be blunt and feeling like i want to bash or destroy something when i think about it and i ask myself why me...

My symptoms have mostly stayed the same they are much worse in cold weather and keeping warmer with warmer clothing makes me feel better and i have less symptoms then.

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Old 09-03-2011, 06:31 AM #76
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Question

Sorry to hear that.

Your need for warmth.... were you tested for macroglobulins in the blood? This symptom is a sign of increased proteins circulating in the system, which react to cold temps with increased symptoms.

http://en.wikipedia.org/wiki/Waldens...roglobulinemia

Also you can look up cryoglobulinemia, whose symptoms are intolerance to cold.
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Old 09-03-2011, 07:32 AM #77
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Default And--

--if you've got tingles going up and down your spine, has the spine itself been MRI'ed or otherwise checked?

Problems with the brain and spinal cord can exactly mimic, symptomatically, those with nerves in the peripheral areas (one reasons investigations into neurological symptoms are often so long, expensive, and process of elimination).
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Old 09-03-2011, 10:53 AM #78
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Quote:
Originally Posted by nide44 View Post
Most neurologists are clueless as to the proper care & treatment of PN.
Idiopathic is too often labeled when the doc is bluffing, clueless, and wants you to gop away.
Listen to Glenn.
Go to Lizajane.org to see all the tests that should be done.
Get yourself a neuro who is a specialist in PN & does research.
Johns Hopkins, The Jack Miller Center, Cornell-Weill, & Mayo Clinic (my last choice), are good places to find a good neuro.
I think you are right. I've been passed to four different neurologists in the same Neurology Clinic in a very prominent hospital in NC. None of them know what is going on. My general practitioner is first to admit he doesn't have a clue - that's how I got to a specialist. I will say that going into the hospital setting each time and seeing others there - I have felt guilty about complaining about my pain - at least I can still walk. But it hasn't gotten any better - just worsens over time. My biggest fear is that I will not be able to walk at some juncture.
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Old 09-04-2011, 09:20 AM #79
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Originally Posted by Gammy Sue View Post
I think you are right........ None of them know what is going on. My general practitioner is first to admit he doesn't have a clue - that's how I got to a specialist. ...... at least I can still walk. But it hasn't gotten any better - just worsens over time. My biggest fear is that I will not be able to walk at some juncture.
That is how most of us feel in the beginning, but many have found that it isn't necessarily the case, with proper treatment, meds & supplements - by docs who are in the know & on top of the problem. If it weren't for that I'd be a bed-ridden basket-case. But now I work 6 days a week and can participate in most of the things I used to. Some life style changes are necessary, but you don't automatically have to be reduced to the status of an invalid.
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Old 09-04-2011, 01:39 PM #80
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Quote:
Originally Posted by Gammy Sue View Post
I think you are right. I've been passed to four different neurologists in the same Neurology Clinic in a very prominent hospital in NC. None of them know what is going on. My general practitioner is first to admit he doesn't have a clue - that's how I got to a specialist. I will say that going into the hospital setting each time and seeing others there - I have felt guilty about complaining about my pain - at least I can still walk. But it hasn't gotten any better - just worsens over time. My biggest fear is that I will not be able to walk at some juncture.
Sue, I share your fears. I've been to six, and not only have none of them even come close to addressing the pain, but in four years, I've gone from an active, healthy person to someone who can barely climb one flight of stairs. The way it's going, I wonder how many more months I'll be able to do even that.

How is it possible that nobody can even tell you why?
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