Need some help or ideas! - Neuropathy Message Board

RAFsyth · 07-01-2001, 08:16 PM

I am a 63 yr old male living in the Los Angeles area. Peripheral Neuropathy was confirmed in my hands and legs in NOV 2000. The confirmation was through EMG and he classified it as above moderate. I have gone through all the tests to detct the root cause with no results. I have tried several medications including Neurotrin without success. I have had surgery for bladder and prostate cancer and that appears to be under control. I have had bone problems, as many as 14 fractured ribs with no known trauma or cause. There have have been hints and suspicions by the doctors of some type of cancer floating in the system but nothing can be confirmed or pinpointed.
My main concern at the moment is the progression of the neuropathy in my legs. It started about 2 years ago with some minor pain and numbness in my toes and has now progressed to major numbness and pain from my toes all the way up to my knees. If I walk or stand for more than a couple of minutes the pain in the calf muscle feels like a horrendous cramp. I take at least 4 tablets of Vicodine 7.5/750 daily. Fortunately, I have no side effects from the Vicodine.
I have been told that I could be in a wheelchair within 6 months. This is not an acceptable alternative to me without a fight. My ability to continue fighting and my sense of humor (some call it bizarre) are what keep me going.
My problem is I don't know who, how or what to fight. The only current recommendations are a retake of all the tests that i have gone through once or twice. My financial resources are limited and I just can't see spending the money to redo what has already been done.
I need some new ideas or thoughts as to how to prodeed. Any suggestions would be greatly appreciated. Thanks and God bless.

WoodRunner · 07-02-2001, 01:07 PM

Hello RAFsyth... Your pain symptoms sounds similar to my fresh battle with Painful Neuropathy. However, I know my cause was either from running too high too long on blood sugar levels and/or possibly my extreme b-12 deficiency. Did you really give the Neurontin time to work? You must ramp up on the dosage and then sometimes wait another couple of weeks or so to see any benefit. I'm taking 1800mg daily now and didn't see any benefit at first. Now, I believe it might be helping. However, then... the biggest quick benefit came when I started to combine it with a twice daily dosage of Elavil. 25mg at bedtime and then 25mg at around 11:00am each day. Could you try the Elavil? I hope you fare well.

WoodRunner.

RAFsyth · 07-05-2001, 10:44 PM

Hi WoodRunner...Thanks for taking the time to respond. I checked back on my medication records and I had indeed tried the medications that you suggested without any success. The Neurontin is primarily effective in treating diabetic peripheral neuropathy and the Elavil is to treat chronic pain. In my case they have tested out diabetes, B-12 and all the known causes at the current time. The Vicodin ES provides pain relief for me but there is nothing being done to attack the disease itself, in fact they don't even know what that root cause is. Hard to attack something when you don't know what to attack. The rapid progression is what is bothering me. I have gone from moderate to severe in just 6 months. That is much more rapid than what is normal, from what I have been told.
By the way, looking backing on some of your old posts, I noticed a discussion about B-12 vs B-6. It may be a little different than you were told.
Thanks again and best of health to you, Russ

[This message has been edited by moderator1 (edited 07-06-2001).]

FREDO · 08-05-2001, 09:55 PM

Hi RAFsyth, I have recently been to a pain management Doc due to back surgery that did'nt take. I had back fusion at L-5/S-1 in jan 2000. The fusion, however, was minimal and therefore I have to deal with beu ceu pain.

Anyway, this Doc told me I had peripheral neuropathy from the knees down; no reflexes, leg pain and feet go numb after standing 1 or 2 hours. I am also Type II Diabetic, no drugs, just diet controlled.

He told me that it was very possible that my leg pain/numbness was due in part to failed surgery at L5/S-1, so.... it might do some good for you to have an MRI done on your back to see if there is any problems around this area.

Hope your pain free tonight, good luck,

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FREDO

FREDO · 10-07-2001, 09:30 PM

RAFsyth - As stated above, I also have confirmed painfull Peripheral Neuropathy. I was getting pain in my calves just walking a couple blocks, had to take breaks, then continue walking.

One month ago, I was prescribed 20mg Paxil x 1 daily. It is a SSRI, and treatment of neuropathy using this is becoming expanded. After three weeks dosing, I doubled the distance I can walk before calves start cramping, and feel it has helped me in a couple other ways; not so much pain or pins and needles in feet, legs or arms.

It would be worth your time to check it out.

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FREDO