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Old 01-06-2008, 09:15 PM   #1
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paulo60 HB Userpaulo60 HB User
Thumbs down The Insidious progression of Peripheral Neuropathy

For many of you with longstanding diagnoses of peripheral neuropathy, particularly those who have sensory motor neuropathy with demyelination and neuroaxonal type disease, this may be familiar sounding. I have an idiopathic, probably inherited combination of several variants of CMT. I say it is unknown but probably inherited because a CMT genetic panel revealed a mutation on a sequence of genes of which there is insufficient information in the medical literature to inform a diagnosis; and because I have had every other blood test, urinalysis, MRI of both brain and complete spine, to rule out any other cause. And I don't have diabetes, yet. Like most of you, those of you who may be close or similar to my condition, e.g., numbness, or parathesis, pain, burning, cramping, shooting etc., coordination and/or balance problems, severely abnormal nerve conduction and EMG tests, showing many nerves absent. My legs move ok for awhile, then turn to lead and make walking a challenge. I have had this for over 20 years, did alot of research to try to find not only natural treatments, but to see if I could discover where the slow death of my peripheral nervous system might lead me. All the while it was an invisible disease, only with instruments could it be measured and quantified. Once it had become a chronic pain condition I had to put up with years of family rumors that I was a prescription addict, even though there was never any reason to think that. I have alway had just one pain doctor at a time, and always made each prescription last the entire month, so it took some years before the label "addict" faded and my family began to realize that while they might never have heard of this disease, it is not rare, and I have it. I knew that as sensory and motor nerves die off that there is a corresponding effect on the muscles and tendons that those nerve bundles served and stimulated. And although I have had increasing problems with my feet gradually losing the natural shape they had when I was a young runner, it wasn't until last week and I had foot x-rays that I was finally able to see how this disease destroys our functional abilities. Finally I was able to connect the dots, from nerve damage to nerve death; from nerve death to muscle and tendon atrophy; from atrophy of extensor tendons and muscles involved in proper foot function to the atrophy and bone deformations of the foot itself. The x-rays completely startled me. To see just how mangled my bone structure has become over all these years, and to realize that I may actually only have a few years left of my ability to walk at all, was a real eye opener. There is no question in this post. Merely a statement, one of gratitude that there is a place I can write about a disease I have an know that when I am finished writing there will be others who might read it who are experiencing the same exact things. There are some good bits of scientific crumbs of hope that we can gobble from internet sites, but getting those "discoveries" into human trials and then into treatments that MIGHT be able to reverse some of the damage to nerves that still have some life in them, might be awhile in coming. In the meantime, I plan to protect my feet no matter what the cost, and fight the intelligent fight long after I have exhausted all the conventional things like lyrica, cymbalta, neurontin, which I did finally a few years back. The thought of the rest of my life on narcotics is not very appealing to me, but then I remember the disabling pain during the few times I have taken myself off of narcotics, and I am again grateful that they exist and i can get them without much of a hassle. I am also glad that after ten years I have gone way up in tolerance and brought myself way back down so that I can get by on a quarter of what I used to take. Carpe diem! Happy New Year and Peace and strength be with you all...Paulo

 
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Old 01-10-2008, 06:42 AM   #2
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Re: The Insidious progression of Peripheral Neuropathy

Your post was exactly what I needed this morning. I was at the end of my rope, feeling sorry for myself about the unending pain, the remarks from family members, etc. I've only been suffering for about 2 years now, so I cannot even imagine how you've done it. Thank God for this site, where I go when I feel so alone in my pain. Bless you.

 
Old 01-10-2008, 11:36 AM   #3
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Re: The Insidious progression of Peripheral Neuropathy

Quote:
Originally Posted by shabbyanne View Post
Your post was exactly what I needed this morning. I was at the end of my rope, feeling sorry for myself about the unending pain, the remarks from family members, etc. I've only been suffering for about 2 years now, so I cannot even imagine how you've done it. Thank God for this site, where I go when I feel so alone in my pain. Bless you.
I understand too well what feeling at the end of your rope feels like. It's funny how that rope keeps stretching longer and longer, as we learn newer and better coping strategies. I hope you have someone strong in your life, and that your disease might be milder or slower in progression, than mine. Do you have a firm diagnosis? If so would you post your circumstances. Besides just being a victim, I am also keenly interested in this complex disease, and how it presents itself in different forms in different people. If you're like me, and have an inherited sensory motor peripheral neuropathy, maybe you are luckier than me and have a known variant of CMT. The slight benefit to knowing the type you have, is knowing what to expect. In my case there is no more talk of trying different drugs, like neurontin, which I took so much of I have mild kidney damage, and like all the rest of the pharmaceutical buffet items that may sometimes help those with reversible forms of neuropathy (I have a mild envy for those types, because there is hope) only cost me alot of money, and some trying times, as high doses of neurontin, and even normal doses of lyrica and cymbalta, had undesirable side effects mentally; while not doing a single thing to slow down the progression, or relieve any symptoms. You say you have only been diagnosed for 2 years, more or less? Please tell me, if you want, how they arrived at your diagnosis, what types of treatment[s] in addition to anything for pain that you have been given, and what your symptoms are. Besides pain medication, my neurologist recently wrote out a final prescription, meant as advice for me to take on an ongoing basis. The prescription was for two supplements, 1000mg of Acetyl L-Carnitine, 3 times a day, and 300mg of Alpha Lipoic Acid, 3 times a day. I sometimes think, as these are excellent supplements that do offer some nerve support, that had I received this prescription 20 years ago, it might have made a difference in where I am now. Instead I took elavil, topomax, neurontin, tegretol, even depakote, a drug used for bipolar disorders, along with lyrica and cymbalta, none of which are of much use treating the inherited form. Well Anne, don't let it get you down, and do post a bit more about your neuropathy. Sometimes writing about the problems you are facing in dealing with this complex disease is helpful, as you can get some good feedback. That's what's so great about this site. Take care...Paulo

 
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Old 01-21-2008, 07:34 AM   #4
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shabbyanne HB User
Re: The Insidious progression of Peripheral Neuropathy

Quote:
Originally Posted by paulo60 View Post
I understand too well what feeling at the end of your rope feels like. It's funny how that rope keeps stretching longer and longer, as we learn newer and better coping strategies. I hope you have someone strong in your life, and that your disease might be milder or slower in progression, than mine. Do you have a firm diagnosis? If so would you post your circumstances. Besides just being a victim, I am also keenly interested in this complex disease, and how it presents itself in different forms in different people. If you're like me, and have an inherited sensory motor peripheral neuropathy, maybe you are luckier than me and have a known variant of CMT. The slight benefit to knowing the type you have, is knowing what to expect. In my case there is no more talk of trying different drugs, like neurontin, which I took so much of I have mild kidney damage, and like all the rest of the pharmaceutical buffet items that may sometimes help those with reversible forms of neuropathy (I have a mild envy for those types, because there is hope) only cost me alot of money, and some trying times, as high doses of neurontin, and even normal doses of lyrica and cymbalta, had undesirable side effects mentally; while not doing a single thing to slow down the progression, or relieve any symptoms. You say you have only been diagnosed for 2 years, more or less? Please tell me, if you want, how they arrived at your diagnosis, what types of treatment[s] in addition to anything for pain that you have been given, and what your symptoms are. Besides pain medication, my neurologist recently wrote out a final prescription, meant as advice for me to take on an ongoing basis. The prescription was for two supplements, 1000mg of Acetyl L-Carnitine, 3 times a day, and 300mg of Alpha Lipoic Acid, 3 times a day. I sometimes think, as these are excellent supplements that do offer some nerve support, that had I received this prescription 20 years ago, it might have made a difference in where I am now. Instead I took elavil, topomax, neurontin, tegretol, even depakote, a drug used for bipolar disorders, along with lyrica and cymbalta, none of which are of much use treating the inherited form. Well Anne, don't let it get you down, and do post a bit more about your neuropathy. Sometimes writing about the problems you are facing in dealing with this complex disease is helpful, as you can get some good feedback. That's what's so great about this site. Take care...Paulo
What a nice surprise to log in and see your note!! As far as having someone strong in my life, no. I have loving parents and siblings, but they don't really understand. I also have two grown boys who don't get it either. I am married. My husbands job takes him out of town for 3 weeks out of every month. But he's going through a midlife crisis or something, alcoholic, waffles on whether or not he wants to be married. Both my boys have emotional problems, one's bi-polar, the other has social anxiety disorder. I'm sure my life is no more stressfull than anyone elses, but sometimes I have to say "DAMN!!"

I've been sickly since I was young. Unexplained fevers, flu-like body aches. That was in the 70's and went to military doctors, nothing was ever really investigated. Kind of grew out of that in my 20's, then at about 35 started getting aching joints and muscles. Had hysterectomy, gallbladder out. Was diagnosed with fibromyalgia by rheumatologist. Then about two years ago, had numbness and tingling in hands and feet. Body jerks. Primary physician was not concerned. Last February I got mono. Been downhill since then. I finally made appointment with neurologist myself after waking up with a "dead" arm. He ran all the usual tests. Nothing unusual on MRI, but electrical testing showed nerve damage, so was then diagnosed with peripheral neuropathy. I had a spinal tap done in December and am still waiting for the results. Don't know that that will give any answers anyway.

As far as medications, I'm on neurontin, ultram, effexor, rozerem, colestid, and xanax as needed (I've suffered from anxiety and depression all my life). The ultram is what is actually helping with the pain, I believe. I can tell if I'm past my scheduled dose, because the pain quickly comes back. I feel hopeless, helpless, and generally disgusted with myself. I had a busy life before this, running my own daycare business, then had to close down when the mono hit. Now it's hard to remember having the energy I used to have. And the not knowing if I'll ever get it back is so depressing. I feel guilty feeling sorry for myself when there are others out there suffering so much more than I. And I'm so tired of trying to explain myself to family and friends. My brother is a drug addict , which doesn't help me when I tell my family the pain meds that I'm taking. To them, drugs are drugs.

Well, I've just read over my letter, and I'm sounding pretty whiney!!! I don't like to complain about my problems, and I probably didn't answer any of your questions anyway! You sound like you have really done your homework. I need to go ****** some of the terms you used! I live in a very small town in Oklahoma, and am seeing the neurologist here. I may need to go to Oklahoma City if I want to get more answers as to what I have and why. I am very interested in finding the cause of my neuropathy, as some things I have read have led me to believe that further nerve damage could be stopped if given the right treatment. Thanks for your time and interest. Obviously I needed to unload! Anne

 
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