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Member Neuropathy Journey Stories: What's Yours?
Neuropathy | Last Active: Oct 17 5:52am | Replies (571)Comment receiving replies
I was diagnosed with mild Idiopathic Neuropathy about 2 years ago . Symptoms have increased: Numbness and burning sensations, and sometimes cramping, from my knees to the bottom of my feet. The symptoms have gotten worse which led me to see my doctor who is a GP. Sleeping was difficult and I also have a sleep problem and use CPAP machine. I have had both knees replaced. One 13 years ago and the most recent one 2 years ago. With the last replacement I was swollen and bruised from my groin to my toes on the left side of my body. Over a period of several week this subsided.
The neuropathy symptoms have gotten worse and I have been told nothing can really be done by my General Practitioner. He has ordered Gammapentin 200mg at bed time. I was reluctant to take it because the side effects worried me. I am also taking meds for hypertension. Losartan 100mg/ HydroChlorothiazide (Hctz).12.5 mg, Amlodipine 5 mg. & Clopidogrel 75 mg., for a suspected TIA I had 6 years ago. From what I have researched, Losartan and Amlodopine side effects include neuropathy. Although i have not had an attack of Gout on Allopurinol in over 10 years, I was told that the Hctz caused the Gout and it was discontinued. I have not seen a neurologist. Despite this, I am a high functioning 87 year old, who runs a household and takes care of a husband on hospice. I am worried about disability in the future with this diagnosis. I am interested in hearing about other experiences wit this diagnosis.
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Hello @cameron2020, Welcome to Mayo Clinic Connect. Thank you for sharing your neuropathy journey experience. Your story is similar to mine. In addition to my idiopathic small fiber peripheral neuropathy, I have obstructive sleep apnea, use a CPAP plus I have high blood pressure caused by primary aldosteronism which I take spironolactone 25 mg and hydrochlorothiazide 25 mg daily. I take supplements to help with my neuropathy. They are not a cure but I do believe they have slowed or stopped the progression since I started taking them in 2016. I also have lymphedema in both legs but somewhat worse in my right leg and I wear 20-30 mmhg compression socks which don't do much to help with the way the legs feel but does keep the swelling down. When I was diagnosed with neuropathy in 2016 I started making some lifestyle changes trying to exercise more and eat healthier which I'm sure also has helped me some.
It is great to hear that you are a high functioning 87 year young person. A positive attitude and learning as much as you can about your condition and available treatments will help you in the long run. A couple of sites I have found helpful for learning about neuropathy are
- Neuropathy Commons: https://neuropathycommons.org/
- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
You mentioned numbness, burning sensations and sometimes cramping in your legs. Have you discussed the symptoms with your doctor?
Just wondering if it might be similar to some issues I had with swelling in my legs before I was diagnosed with lymphedema. The main thing my doctor was worried about was a possibility of a DVT (deep vein thrombosis) or PAD (peripheral artery disease)
-- Mayo Clinic Q and A: Evaluating and treating leg numbness and cramping: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-evaluating-and-treating-leg-numbness-and-cramping/