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Anyone here dealing with peripheral neuropathy?
Anyone here dealing with peripheral neuropathy?
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Anyone here dealing with peripheral neuropathy?
Interested in more discussions like this? Go to the Neuropathy Support Group.
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You refer to "my disease". I had thought that you weren't certain what it is but it sounds like you are. If you don't mind saying, what is it?
The skin biopsy says dermamyositis. That's what the muscle biopsy today was looking for. My other symptoms; dermagraphia, other unexplained rashes, COPD (I've never smoked), hiatal hernia, iratable bowel, uncontrollable acid reflux without disease, intestinal inflammation; are textbook.
Keep in mind I'm not a meat eater, I limit my vegetable intake to the ones my wholistic practitioner said were acceptable for me, I used digestive enzymes, vitamins, other supplements and no alcohol, no caffeine, no chemicals since I was 18...seriously. Because my migraines have been so bad since I was 8 and stomach pain has been so bad since I was 12 I had my first colonoscopy at 21.
You'd asked about MS before, I have increased hyper intense foci but they say it's due to migraines not MS. I'm no doctor but I think the Mayo clinic, I've never been but I have faith they are the best, will discover that people with chronic migraines are because of this white matter.
Well that, like a lot of those I see on these boards, is a new one on me. It looks like the treatments are basically the same as those for other autoimmune conditions and it does look like they might slow it down. I assume that they did an double stranded dan antibody and anti-sm to maybe rule out lupus. All I can say is good luck and keep the faith. Apparently there are periods of remission so hopefully you'll get some prolonged ones.
Hi yes I have three other diseases that are considered autoimmune. They seem to come after you have one disease.and pretty soon you have more of them. <br><br>
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2 ReactionsI've had peripheral neuropathy for several years now. About 7 years ago, I had a large flat swelling on the outside of my right leg. Then I developed a swelling on the inside of my right thigh. Checked for blood clot - none at the time - but shortly after, I became unable to walk without complete support. Dr. prescribed physical therepy. Helped but was still bad. Got some better over time but needed a cane and lost energy. Minor tingling started in feet - Dr. poked around on my foot - I could feel the poking so he couldn't determine what it might be. Developed cancer a couple of years later and was on chemo for 6 months and radiation for four sessions. So, now it seems that I had the beginnings of neuropathy before the chemo and the chemo made it much worse - the gabapentin did nothing to help - but now I have blood clots and am on warfarin. I am suspicious of most of the drugs on the market as the side effects seem to make taking them a risk, if not dangerous. I take warfarin and when pain is severe, I take acetomenaphin. I try to go to bed with my feet cold and use a good foot cream before going to sleep. Even though I'm 80, I would like to extend my life and don't want to take risks with side effects. Should the time come when a drug is honestly beneficial, I'll take some. Seems like the med community treats symptoms and the real causes are sometimes overlooked or are beyond present medical knowledge. I'm okay with that - wish it were different but it's not.
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1 ReactionHello @mfobrien36, I hope you find some relief with your pain. I found a website that has a lot of information on neuropathy that might offer some suggestions for you - https://www.foundationforpn.org/. I would remain proactive with your neuropathy and keep trying different treatments until you find something that works for you. Also, look for a neuropathy support group in your area if possible. I am a member of the Minnesota Neuropathy Association (http://www.neuropathy-mn.org/). They hold monthly meetings and bring in guest speakers on different neuropathy related treatments if you happen to live in the Minneapolis area. Good luck!
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2 ReactionsThanks John. Other side of the country, though. Attendance at monthly meetings or support groups would likely make me crazy as I spend too much time thinking about the neuropathy anyway. I try not to make it my life's only event. The very fact that there are these groups active indicates to me there haven't been many forward strides in helping or curing. So, I'll have a donut and a cup of coffee and distract myself with computer games. I will keep an eye on the foundation news and hope for the best - thanks for bringing them to my attention. I've signed up to receive the newsletters.
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1 ReactionI'm with you Mary - although I don't have the pain and just have numbness in my feet and legs, I try to focus on staying positive and looking for something that makes the condition a little better. I think one of the best things to do is walk more if possible. I'm 73 and have trouble with the walking so I bought a recumbent exercise bike that I can sit on and pedal for exercise. I try to do it for 30 minutes 4 to 5 times a week. Also try to increase my walking in my day to day activities. I let my neuropathy go undiagnosed for 15+ years because I was told by a doctor if the tests show you have nerve damage there is nothing that you can do for it so I didn't do anything about it. This past year I decided to be more proactive and have the tests done (EMG, MRIs, etc.) and meet with a neurologist. It opened a whole new world of information and insight into how many people suffer from neuropathy along with the different kinds and causes. If you do Facebook, you might want to join the closed group "Our Neuropathy Friends". They have over 3,000 members from all walks of life that can answer questions, suggestions on what has or hasn't worked for them. Good luck!
Yes, I believe I am.If I move my toes it feels like there is mud with rocks mixed in. It's moving up my feet and ankles, numbness, feet feel cold but there're nice and warm. Sometimes they are warm but I always have a burning feeling in both feet. I've tested myself with a sharp item, (shouldn't do this), and I have no feeling from the toes up to the beginning of my ankles, both feet. When I walk it feels like I'm walking on rocks, with and without shoes. A lot of leg pain and I used to have Restless legs so bad I would be in the bathtub, super hot water, 6 to 8 times a night. Had a sleep study 15yrz or so ago and they said my legs went crazy. They were all over the place. It took me 20 yrs and a lot of trials but I found a med that works pretty good. I've had numerous eeg or emg's, with the needles, results were not good for legs and arms. The last one the dr said it was caused by my sarcoidosis, I've had eight back and neck surgeries which is what I always blamed. He said no. I have 5 immune diseases, inherited from my Mom. Needless to say I'm 60 now and have battled this crap since 1983. I'm tired. I apologize for running my 88mouth, I'm usually on the chronic pain group, but I've been down for about 3 months and am just now getting back on. I saw your post and thought we had something in common. Does it sound close to your problem? I don't know but would like to hear your story. My user name is briansr. Cl9ck on my namm and we can talk privately, or just pozt, I should catch it!! briansr
I am an old RN and I always recommend Looking closely at every medication and supplement you are taking when a new "feeling" starts even if you have been taking something for a long time. My husband has had neuropathy with several different classifications of drugs which makes me wonder about a "filler" he may be sensitive to that is used to make a tablet or capsule!! We all need to be our own "detectives"!
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