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DiscussionLooking to connect with people who have non-diabetic neuropathy
Neuropathy | Last Active: Jul 14 1:33pm | Replies (960)Comment receiving replies
Replies to "In 2013 I was diagnosed at Mayo with non diabetic peripheral neuropathy and essential tremor. Symptoms..."
Hello @jetelling, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I don't have essential tremors but I do have idiopathic small fiber peripheral neuropathy. I think just doing what you are now, searching for answers is a plus. One of the best things we can do is learn as much as we can about our health condition and what options are available to help - both medical and natural.
You may be interested in several other discussions to learn what other members have shared.
-- Essential tremors: any ideas on coping and managing tremors?: https://connect.mayoclinic.org/discussion/essential-tremors-1/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Also, learning as much as you can about other treatments for neuropathy may be helpful. These are the 2 main sites I use for learning more and the latest research.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
Which of your symptoms causes you the most concern or pain?
Hello @jetelling,
I started developing tremors and then other PN symptoms late last fall, due to an autoimmune disease. I’m on immunosuppressive meds as I’m a transplant recipient, so reducing my meds over the past few months has somewhat lessened the tremors. I also limit my coffee. I know stress definitely makes the tremors much worse. I have to type for much of my work, so that’s been a creative adaptation experience. I also broke a bunch of glasses early on…ugh. So, I just try to be very mindful of doing things more slowly, cautiously, and with a firm grip! I do hand exercises throughout the day to keep my grip strong and my fingers nimble.
I’ve found using Siri helps with quick notes, texting, emails, etc. I try to avoid any kind of hand writing, as I can barely read it, so I’m sure as you’ve found, no one else can! Do you have a mobile phone or tablet you can use? I do most everything on an iPad mini. It connects to a wireless printer if I need a hard copy. It’s small, portable, much easier to type on than a phone and does everything a laptop does. I’ve gotten quite fast at typing with my index fingers and steady my hand with my pinkies on the side of the iPad.
Essentialtremor.org has a list of adaptive devices, tools, etc. you might find helpful.
I’ve found going through some of the other neuropathy discussions on Connect to be informative on PN specifics, I bookmark the ones with suggestions I might find useful or treatments to ask my neurologist about. There are several discussions on supplements; @johnbishop is quite knowledgeable on that front. I take B vitamins, R-ALA and Acetyl-L-carnitine, and 300 mg Gabapentin at night. The sharp nerve pains are better; numbness, tingling, and pain are slowly getting worse. But, I’ve only been on the supplements a couple months. I have my first appointment with a neuromuscular doctor on Monday, so I’m hoping she can offer some treatment ideas. Do you see a neurologist?
(Even though I do not have diabetes)