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[QUOTE=shabbyanne;3383507]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.[/QUOTE]

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:angel:) 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
[QUOTE=paulo60;3384033]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:angel:) 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[/QUOTE]

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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