Peripheral Nerve Hyperexcitability (PNH) Community
Neuopathy
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This patient support community is for discussions relating to Peripheral Nerve Hyperexcitability (PNH) and the various conditions related to it such as neuromyotonia (NMT), cramp fasciculation syndrome (CFS), benign fasciculation syndrome (BFS), Isaacs syndrome and others.

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Neuopathy

I have no idea why I started having neuropathy this year.  I don't know what the cause of it is, so I don't know if this is the right forum for me or not, but I thought it was strange that none of my doctors seem all that surprised that I'm having all this neuropathy and none of them are all that concerned.  Okay, that seems puzzling in of itself.  I mean, how can neuropathy be normal at all, right?  I figured that I could at least learn something on this forum, though, so why not see what this is about.  What I have found interesting is that for the time being, the low dose of Neurontin seems to be helping with the neuropathy, but it seems like even with the strong pain medicine that I'm on, that it's not helping with all the pain.  It sure does make me nauseous and it sure does knock me out, though.  And, I am concerned that the neuropathy will come back, since I have started having more pain where I usually have all this neuropathy and I'm starting to feel some of that familiar tingling sensation.  I don't have Diabetes, I've never abused drugs, I'm too sensitive to alcohol to even touch the stuff, so It's not even possible for me to become an alcoholic.  The only thing I know is that I have an unconfirmed case of Fibromyalgia.  My doctor did tell me a long time ago that I was borderline at the time.  I think I'm more than borderline if I'm having this much trouble with all this pain and neuropathy.  Any information anyone can give me would certainly be appreciated.
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667923_tn?1266738793
  Hey FurballsMom,
     I just wish I could describe it.It can be undescribible,if that's a word. It's raining here,and you know what that does to us.Yeah, raining in good ole Arkansas.I am sure I am a ways from you.I hope you can understand my way of talking. I am country, can't deny it.I am a 43 yr.old female,w/2 boys(11&16),and they do need their mom.It is so hard sometimes when I just can't get up.Thank God my mom lives next door. We live in a mobile home in which I must say is not trailer trash.lol I love having help but so driven that it makes it much more difficult.
    I agree w/you @ the docs. they just don't seem to be concerned anymore like they used to when I was growing up.I am sure there are some but you have to look awfully hard to find one that will talk to you and explain everything. I have yet to find that doc.One doc, after I waited in lobby,then his room, turned me away and told his nurse in which I overheard "I am out for the rest of the day, tell my patients to reschedule. We drove almost 3 hrs. to get there too.Oh, was I angry and in pain.
    I had surgery there in '06 in Feb.I made it through the next 2-3 mos. okay but still didn't feel right.My rt. arm was burning and aching. The doc. said it was my C5, that was the disk they took out. Man, was that strange.I didn't really think @ it until we left. Besides that seem them 9 out of 12 mos. in pain.They would just take another MRI or EMG ,send me home.I'd come back in pain.I mean I was suffering, tears rolling.These people,I couldn't understand. Why didn't they just admit me there,they had a hosp.on top of their floor. I don't know.
    We have something in common. I don't drink either. Never could.Don't like the stuff.
Only bad habits I have are my cokes and coffee.Oh,I started smoking after a stressful situation. I'll save that one for later, it's a big one.
     I think my problem started when I had a series of 3 nerve blocks. They call them ESI's, right? Well, the first two helped me tremendously but the third felt like a lightning bolt came out of the sky and struck me on the table. My feet and hands felt numb right then.I was told to sit up real fast and was asked if I had heavy breathing or was my ears ringing. MMMMMM...sounds like they were panicking. I believe I might even have two seperate issues, my neck and where they punctured me in my spinal cord. I am not a doc. but I know my body and how it feels. There is something that pulsates in my back right in the middle @ where that needle hit. I will find out 4-13  going back to the place I had my surgery but it's going to be different this time. I told my mom and dad I wanted them to go and my son(youngest and w/me all the time)and my husband. They will all be in the room and I told them they need to all say something, to stand .I want them to give account to what I've been through.I'm going to have my say to. I am a christian and won't be anything but humble but I will get my point accross that I'm not leaving until I at least get some answers to why I am having all this neuropathy,pain
     Sorrry, I was just venting but I will be ready that day.It's taking me so long just to get this far. I just want some answers.The pain clinic that did my blocks said I had this to,DDD,Spinal Stenosis ,Myofascial pain,Cervicalgia,Fibro,but nobody has said anything @ neuropathy.We'll find out when I get there.
Best wishes on what you're dealing with. ..stay strong ...and keep your chin up:)   K
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