Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I’ve come to regret it a little since it’s gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I’m waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it’s associated with pre-diabetes but I’m not buying that diagosis just because I’ve had it for a long time and do not have diabetes. I think it’s related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I’m really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening…praying that you all will find some relief.
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Me too. It took them four years to find it. They didn’t believe me because the blood tests were “inconclusive” and they said I had fibromyalgia as I continued to deteriorate.
Isolating an autoimmune disease can be very complicated unless the symptoms jump out at them, like discoid lupus with corroborating blood work. Did you have a positive ANA test? Any indicators of ongoing inflammation like a positive ESR and/or CRP? What made them dump it into the fibromyalgia bucket? My pain has subsided the longer that I’ve had the neuropathy, now numbness is the primary thing. That and its impact on my gait. I have to be careful walking over uneven surfaces. The pain meds that I use now are gabapentin and duloxetine, which are usually adequate. I have some tramadol too and will use that only if things get out of hand from too much walking. If I had any advice I would say to keep walking, even with pain. If you have a treadmill, make yourself use it. I’m convinced that a lot of waking has arrested the progress of my neuropathy but medications have probably helped as well. You may never find out the root cause for your problems. I’ve never heard of fibromyalgia causing neuropathy but I’m not sure that’s what you said. Anyway, don’t let the pain beat you, take control of it.
Liked by Colleen Young, Connect Director, John, Volunteer Mentor
None of my numbers ever reached positive; ANA, or any inflammation indicators. But I the numbers, including RA factor, have been generally more than half and continued to increase towards positive over the past year. (Tested 3 times)
No, I don’t think the pain/ numbness has to do with fibromyalgia. They said I have fibromyalgia. I’ve been screaming from the mountain-tops that it’s not fibromyalgia and they wouldn’t listen. I JUST left from a muscle biopsy so I should have confirmation on my autoimmune disease. I’m currently on no pain meds. I hav tried gabapentin and duloxetine and neither touched my pain.
You are right. The numbness is a whole other beast. I’m only 38; I can’t grasp things…I can’t feel things…I have to have a special case on my phone. I hold it for a bit then I lose feeling in my hands. I hear [I’m] “too young for this” way too often. I don’t throw that pitty party because there are children with the disease that it appears I have. And if people as saying that I should snap out of it, I’d like to do that too but I need some medical assistance. 😀
Thanks for the tips. Id like to get back to exercise, I was a ballet dancer and an actress but a hallmark of my autoimmune disease is weak shoulders and hips as well as organ failure. I am currently on three inhalers for COPD.
I started doing bicep curls and sitting leg lifts a few months ago but I have to be careful. Once I get good medicine for autoimmune, pain and clearance from my pulmonary doctor I plan to work out again.
The frustration of not having any smoking gun test results can be frustrating to the point of infuriating. They won’t make the call on tests based on trends so that’s where the chronic fatigue/fibromyalgia bucket comes in handy. Biopsies might not be smoking guns either, or so I’m told by my neurologist. Dysfunctional nerves can appear completely normal. Did they test for the more obvious, like MS? Can you think of a medication that you had used prior to your problems? Gabapentin and duloxetine didn’t work for me until I trended toward numbness. Have you seen a pain specialist? A different anticonvulsant or antidepressant or combo might help. Hope that I’m not being annoying by throwing some things out there that may be obvious. There is an answer, but it may take a while to get to it.
Liked by John, Volunteer Mentor
I was a vegan until I started having kids and a pescatarian who trended towards wholistic approach so no, this wasn’t medically induced. I tried for 15 years to treat my gastro and allergy issues wholistically and now I vlog about how dangerous that is so I’m kinda a pariah in the chronic illness community because people are getting on a band wagon as I am learning a lesson. (This also frustrates doctors because my organ and breve damage from not knowing I had a serious autoimmune disease all there years is so far gone and they want to suggest vitamin this and that and I’ve been-there-done-that.) My husband works for an enzyme company and they partner with vitamin and essential oils companies do I get my heart’s desire for free.
I actually stopped taking them all in March because I think between my healthy diet and all of the supplements, that may be screwing my test results too.
I have visibly swollen ankles;which is not a hallmark of fibromyalgia. I have a ganglion cyst on my wrist, also not but also can be totally totally benign and not a major arthritis problem.
You are right, they might try to ignore biopsy results, my last rheumatologist ignored the positive skin biopsy alone and refused to order the muscle biopsy as is standard procedure. That is why he is no longer my rheumatologist. I subscribe to an info page the sent me a link to the experts on my disease in Philadelphia and they explain that with the muscle biopsy, skin biopsy, the organ failure, the neuropathy, they have enough. If the new neurologist says he doesn’t, then I will become enraged. My disease has a 50-70% mortality rate and this is why…dying from preventable lung disease or throat cancer or because the autoimmune disease goes untreated.
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.
There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.
What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.
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.
Liked by John, Volunteer Mentor, pinkmk
I’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.
Hello @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!
Liked by Colleen Young, Connect Director, Ali Skahan
Thanks 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.
I’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”!
Liked by Colleen Young, Connect Director, Mary, John, Volunteer Mentor
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