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    Old 01-16-2010, 09:28 PM   #1
    ddougie
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    Newbie to forum;I think I have Neuropathy

    It started with numbness/tingling in 2 toes and balls of both my feet. Then over the next 8 months stiff and painful joints all over along with carpel tunnel in both hands. Then I found out I had Polymyalgia Rheumatica I am taking Prednisone but the tingling/numbing/burning in my feet has spread to my whole foot. My left arm is now tingling, and the left side of my faceseems numb at times. My hands are still numb and tingling. I don't think the surgery that I'm getting for my carpel tunnel is going to help. My symptoms seem to be getting worse. Any feedback appreciated.

     
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    Old 01-16-2010, 11:02 PM   #2
    Ruby8
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    Re: Newbie to forum;I think I have Neuropathy

    Hi - I have small fiber neuropathy (SFN) and carpel tunnel and so have the hand and foot problems you are experiencing (but not the painful and stiff joints you describe, which I assume are from your Polymyalgia Rheumatica ). Anyway, I feel that SFN alone can affect the carpel tunnel and thus feel that surgery would not help me. My neurologist had me wearing wrist guards for several months, which he expected would improve the carpel tunnel, but didn't. He isn't recommeding surgery for me. So, perhaps before having surgery you may want to discuss with your neurologist whether you could have SFN and whether the surgery is really the right thing for you. I would love to know how things work out for you. - Ruby

     
    Old 01-17-2010, 12:55 PM   #3
    ddougie
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    Re: Newbie to forum;I think I have Neuropathy

    Quote:
    Originally Posted by Ruby8 View Post
    Hi - I have small fiber neuropathy (SFN) and carpel tunnel and so have the hand and foot problems you are experiencing (but not the painful and stiff joints you describe, which I assume are from your Polymyalgia Rheumatica ). Anyway, I feel that SFN alone can affect the carpel tunnel and thus feel that surgery would not help me. My neurologist had me wearing wrist guards for several months, which he expected would improve the carpel tunnel, but didn't. He isn't recommeding surgery for me. So, perhaps before having surgery you may want to discuss with your neurologist whether you could have SFN and whether the surgery is really the right thing for you. I would love to know how things work out for you. - Ruby
    My neurologist thinks that my carpal tunnel syndrome will not go away without surgery. That was before I knew I had Polymyalgia Rheumatica. He referred me to a Rheumatologist because he didn't know what was wrong with me. I've had every blood, urine and xray possible to try and find out what is wrong with me but all tests were negative, except my c-reactive protein and ESR - erythrocyte sedimentation rate, which showed that I have Polymyalgia Rheumatica. I started doing my own research and found this website. I am going to tallk to my Rheumatologist next visit and ask him whether he thinks I have neuropathy, and should I get the hand surgery. I like to know if anything can be done to get rid of this disease and what causes it. I wonder if our diet has anything to do with it? - Doug

     
    Old 01-18-2010, 10:23 AM   #4
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    Smile Re: Newbie to forum;I think I have Neuropathy

    Quote:
    Originally Posted by ddougie View Post
    It started with numbness/tingling in 2 toes and balls of both my feet. Then over the next 8 months stiff and painful joints all over along with carpel tunnel in both hands. Then I found out I had Polymyalgia Rheumatica I am taking Prednisone but the tingling/numbing/burning in my feet has spread to my whole foot. My left arm is now tingling, and the left side of my faceseems numb at times. My hands are still numb and tingling. I don't think the surgery that I'm getting for my carpel tunnel is going to help. My symptoms seem to be getting worse. Any feedback appreciated.
    This is exactly how my idiopathic neuropathy started, but without the painful joints and carpel tunnel. It's mainly in my feet and sometimes I feel my left arm tingling, and sometimes it feels cold. I just switched from neurontin and amitriptyline to Lyrica and Restoril. Only three days on the Lyrica at 100 mgs at night, so I'll see how that goes and up the dose if needed. I had a hard two days getting used to it, though, and don't know if I can take a larger dose yet. I don't see how surgery for your wrists can help your feet. I'd get a second opinion for sure.

    I don't like all the side effects of any of these meds, but what else to do? And as bad as it seems now, it's frightening to think it could get worse, I know.

    I hope you feel better soon and get the answers you need!

     
    Old 01-18-2010, 10:30 AM   #5
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    Re: Newbie to forum;I think I have Neuropathy

    Quote:
    Originally Posted by ddougie View Post
    I like to know if anything can be done to get rid of this disease and what causes it. I wonder if our diet has anything to do with it? - Doug
    One more thing, Doug... I'm giving the WSN Nerve Support Formula a try, supposedly the right B vitamins and which are absorbed in the body properly that might help repair nerve damage. It's a little pricy, but I want to try anything that might help. So far, I can't tell a difference, but it's only been about six weeks or so. Google WSN Nerve Support Formula if you're interested in reading about it.

    Let us know how you do on everything!

     
    Old 01-18-2010, 12:06 PM   #6
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    Re: Newbie to forum;I think I have Neuropathy

    ddougie, just a quick question, did the numbness and tingling with your toes and balls of feet involve any color change or temp change? Did you ever feel like your feet or legs were starved for blood? Any leg cramps? I have Pn and SFN, but I also have raynauds, all can get mixed up together. Just asking, I'm not going anywhere with this but I am interested in how others neuropathy start. As many of us start out with many of the same strange symptoms of apparent idopathic origin. Good luck and keep seaching and fighting for answers.
    Barbara
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    Old 01-18-2010, 08:19 PM   #7
    ddougie
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    Re: Newbie to forum;I think I have Neuropathy

    Quote:
    Originally Posted by byoung6 View Post
    ddougie, just a quick question, did the numbness and tingling with your toes and balls of feet involve any color change or temp change? Did you ever feel like your feet or legs were starved for blood? Any leg cramps? I have Pn and SFN, but I also have raynauds, all can get mixed up together. Just asking, I'm not going anywhere with this but I am interested in how others neuropathy start. As many of us start out with many of the same strange symptoms of apparent idopathic origin. Good luck and keep seaching and fighting for answers.
    Barbara
    There was no color change or temp change when my symptoms started 8 months age but just in the last week I'm having constant burning feet or cold feet and legs. No blood flow problems other than a cold feeling. I get leg cramps and foot cramps but not frequent. I hope this helps. Doug

     
    Old 01-18-2010, 11:34 PM   #8
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    Re: Newbie to forum;I think I have Neuropathy

    Doug - I had a few more comments that I forgot to mention in my earlier response. I assume your doctor identified your carpel tunnel problem by giving you the EMG and nerve conduction tests. If so and these tests were negative except for the carpel tunnel, that could be because you have SFN, which doesn't show up on these tests. That is why many neurologists discount patients with SFN initially, because it doesn't show up on these tests. If your doctor is actively pursuing carpel tunnel surgery because he/she doesn't realize you have neuropathy, that might not be the best course of action. And, as Kangelo points out, surgery for your wrists is not going to help your feet--sounds like a 2nd opinion is in order. Also, I had been more prone to leg and foot cramps in the years before I realized I had SFN. Now I feel these were early signs of the SFN. Good luck. - Ruby

     
    Old 01-30-2010, 03:46 PM   #9
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    Re: Newbie to forum;I think I have Neuropathy

    Doug, Unless I overlooked it, I didn't see where you had an MRI done. I had the exact symptoms that you described and a neurologist sent me to have an MRI. The MRI showed that I had a herniated disc at C-5.

    I'm explaining this to you because by the time I had surgery to correct the compression on my spine, I was told that I may have waited to long, and the nerves may not regenerate themselves. Of course I still carry hope, but you may want to obtain a complete check-up including the MRI.

    Wishing you the best........

    Last edited by islandjohnny; 01-30-2010 at 03:47 PM.

     
    Old 02-06-2010, 05:46 PM   #10
    ddougie
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    Re: Newbie to forum;I think I have Neuropathy

    Quote:
    Originally Posted by islandjohnny View Post
    Doug, Unless I overlooked it, I didn't see where you had an MRI done. I had the exact symptoms that you described and a neurologist sent me to have an MRI. The MRI showed that I had a herniated disc at C-5.

    I'm explaining this to you because by the time I had surgery to correct the compression on my spine, I was told that I may have waited to long, and the nerves may not regenerate themselves. Of course I still carry hope, but you may want to obtain a complete check-up including the MRI.

    Wishing you the best........
    I have an appointment with my neurologist and I will ask about an MRI. I have osteoarthritis in all of my spine from a fall 30 yrs ago. I asked my doctor months ago and he said that if it was a pinched nerve in my neck I would have tingling down my whole leg and arms not just the extremities. 10 months into this and no closer to what is the exact problem.
    I hope your herniated disc is healing.
    Take care, Doug

     
    Old 02-07-2010, 10:40 AM   #11
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    Re: Newbie to forum;I think I have Neuropathy

    Quote:
    Originally Posted by ddougie View Post
    It started with numbness/tingling in 2 toes and balls of both my feet. Then over the next 8 months stiff and painful joints all over along with carpel tunnel in both hands. Then I found out I had Polymyalgia Rheumatica I am taking Prednisone but the tingling/numbing/burning in my feet has spread to my whole foot. My left arm is now tingling, and the left side of my faceseems numb at times. My hands are still numb and tingling. I don't think the surgery that I'm getting for my carpel tunnel is going to help. My symptoms seem to be getting worse. Any feedback appreciated.
    Talk about a small world, I have the exact same symptoms you do including tennis elbow. I hate Hospitals and Doctors are not far behind, not to say there is something wrong with either. My back is an L-series problem ( Blown Disk ), but my emg's keep comming back in a range I can live with so far.The doctor says I should wait till I can't stand the pain any longer as an operation at best is a 50/50 shot at this point. As far as the feet, I have accepted some days I can not go any where I have to walk. My feet burn even with just socks on a lot of days. I go bare foot a lot as you can imagine. I walk funny sometimews as I never know when my left foot is on the ground.I am tying to deal with it myself as I do not want to get hooked on pain killers. When I get up in the morning some days my knees buckle from the stifness and pain. I had a cervical problem for ten years, blown disk . The doctor at that time told me the same thing. He could operate right away or wait, because of the odds thing. I waited until I fluncked every MRI and Nerve test I took. I feel great in that area now. The C spine thing made me numb on the left inside thumb, arm and head.

    case

     
    Old 02-09-2010, 11:20 AM   #12
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    Re: Newbie to forum;I think I have Neuropathy

    HI there. I had some grate advice about carpel tunnel from my chiropractor and saved me from surgery,so far.I do wear the wreist guards to sleep in so my hands don't go limp while I sleep,and do stretches. Gently put tour hands flat together pushing them flat palm to palm,or do this against a wall with you hand more upside down take it slowly , mine are usually very tight, do this till you can put your hand flat on the wall. It helps me to keep out the numbness and pain. good luck, Bcarter
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    Old 03-03-2010, 10:35 AM   #13
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    Re: Newbie to forum;I think I have Neuropathy

    hi. I take trileptal for the cramps associated with SFN and it has helps tremendously.
    I had cramps or muscle spasms that were so powerful that it felt like someone was pulling the muscle from both sides. This is an antiseizure med that quiets down the nerves that communicate with muscles. With any of these antiseizure drugs you have to titrate up from low doses b/c there are side effects. The biggest one for me with this drug was heartburn. Now I just take antacids at the same time and I don't usually get heartburn anymore. Also with drugs like this and Lyrica, your body gets use to the dose and you have to titrate up. Right now we are adjusting both my lyrica and trileptal b/c I have been on the same dose for 1 and 1/2 years and the effectiveness is beginning to wane. Hope this info. helps some of you suffering from cramps. allie

     
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