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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@cehunt57

To all in the Living with Neuropathy group and the various discussions/conversations I’m amazed at how big this has grown to be! I first discovered this in July ‘18 and now there are over 40 screens of info & posts on it! I’ve learned there are many kinds of neuropathy and just as many kinds of treatment. I hope that everyone suffering from some kind of neuropathy will get an accurate diagnosis and appropriate treatment to alleviate the suffering. My own neuropathy story started with type1 diabetes and peripheral neuropathy causing numb, tingly, burning, throbbing pain in my hands and autonomic neuropathy causing gastroparesis that involved nausea, vomiting, stomach cramps, constipation and diarrhea. I participated in a study at the International Diabetes Center where a drug was being tested to treat peripheral neuropathy and diabetic nerve pain (2002 - 2005). In 2002 I was hospitalized and diagnosed with gastroparesis. It was treated with metochlopramide (brand name Reglan) which in my case caused drug induced tardive dyskinesia. That turned into a three year nightmare that I won’t get into now. It was eventually diagnosed and I was taken off the med. The tardive dyskinesia is mostly resolved. I’ve been put on a low dose of antibiotic to take as needed because of its stomach motility properties and I limit high fiber foods. The gastroparesis is manageable. In 2005 I had a pancreas transplant. I did not end up insulin independent but I was able to improve &/or reverse some of the complications of diabetes such as hypoglycemia unawareness, retinopathy, nephropathy and neuropathy with just a fraction of the insulin. The diabetes became manageable and I had a normal HbA1c for the first time during my diabetes. Now I’m nearly 13 years post pancreas transplant. Two years ago my kidney function (which had been relatively stable for 11 years) began to decline. I met criteria for pretransplant evaluation and relisting for kidney transplant. I’ve had an annual pretransplant review in ‘17 & ‘18. Over the past two years I’ve had terrible cramps in my feet and legs that comes out of nowhere in the evenings and middle of the night. It does not seem to be related to blood sugar, electrolytes or other kidney labs; temperature; seasons, physical activity or anything else. I didn’t relate it to any kind of neuropathy. I complained about it to my nephrologist, my endocrinologist and even my podiatrist. No answers. At my recent annual visit to Mayo I mentioned the things I’d read about statins on this site. I was told to try cutting my rosuvastatin dose in half. I will see if that helps. One other thing is that I’ve been dealing with planters warts on my feet for the past 6 months. The recommended self treatment (soak, scrape, OTC product and tape) was not helping and the warts were actually spreading. I went to podiatry about 4 months ago. The podiatry treatment (freezing & acid) has been torture. It finally stops hurting just in time for follow up and more treatment! I was afraid that the treatment was causing a new neuropathy. No one seems to think so and I’ve been advised to inquire about a different wart treatment that will be more tolerable/effective. After reading about a connection between gout and kidney disease I wondered if my feet & leg pain was gout. The Mayo people assured me that gout involves joint pain and that I don’t have that! So I will reduce the rosuvastatin and see if that makes a difference and hope that podiatry can resolve the warts.

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Replies to "To all in the Living with Neuropathy group and the various discussions/conversations I’m amazed at how..."

Omigosh, John - you have been through quite an ordeal, I hope they find answers for you soon. I had a plantars wart about 35 years ago, a doctor applied the acid every week or so and I remember it as you describe: the burning subsided just before the next appointment. It was awful and you have all my sympathy. I get muscle cramps too, they wake me up during the night. Doing stretches several times a day helps, when I remember to do them I don't have any cramps. I tried all the medicines for leg cramps, they didn't help, calcium and magnesium supplements actually made it worse; I added more water but I already drink enough so it didn't help. Massage helps too, I try to do that once a month but I average more like once every 6 months. P)eggy