Living with Neuropathy - Welcome to the group

Hello, Tina

Several days have gone by and I'm wondering if you managed to find any information that's been of use. I know there's such a hodgepodge of information, especially online, for each of the many neurological variations and combinations. Until you mentioned it the other day, I'd not heard of complications from Conn's disease. And the many other neurologies I read about here every day have given me a true education. My own dx of idiopathic sensory/motor neuropathy seems downright straightforward by comparison.

If you have a moment, let me know if you've had any luck in finding helpful information. In the meantime, I wish you all the best!

Ray

Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is a great place to ask questions, share your story and learn about others with similar health issues and possible treatments. Neuropathy can be difficult to comprehend sometimes due to number of different types, diagnosis and possible treatments. It's pretty awesome you have found some experienced specialists that are helping you. That is a big step.

Do you have a diagnosis you can share?

Mine is idiopathic small fiber peripheral neuropathy plus a few more issues. I have to share a story about the idiopathic diagnosis. I was at a Minnesota Neuropathy Association that had 3 different speakers. There was a short questions and answers session after each speaker. The first two speakers were asked the same question - how many people around the world are affected by peripheral neuropathy? The first speaker said the number was around 20 million or so. The second speaker said including China about 80 million had some form of neuropathy. The third speaker, an 80+ year old neurologist who still had a small practice and is doing research at the University of Minnesota to develop a inexpensive test to determine if you have peripheral neuropathy, said "in deference to my younger colleagues, idiopathic was named after the idiot neurologist who did the diagnosis. If you live long enough everyone gets neuropathy because the nerves will eventually start dying off". He drew the biggest laugh from the crowd.

Hoping for some answers for you.

John

I finally was diagnosed at the age of 81 after several years of suffering with pain in my feet and balance problems. Some days are worse than others. My diagnosis was Idiopathic length dependent axonal sensorimotor polyneuropathy. My life has changed radically, but thanks to a supportive loving husband I can still find joy in my life. My neurologist has me on 900 mg of Gabapentin daily. Also I wear compression socks. I thought the Gabapentin wasn't helping me so I stopped it for one week, and then realized my symptoms were worse. I have accepted my condition and just will have to adjust to my limitations. Happy I have found this website.

It’s not with ease it pains me.
It is with determination.
I started with a few hundred and have very slowly progressed. It sucks but I do it
I am writing a book outlining my progress
“Small Steps and a Few Dreams”
I hope for you🙏best wishes and some relief!!!
Regards,
Ron

I finally was diagnosed at the age of 81 after several years of suffering with pain in my feet and balance problems. Some days are worse than others. My diagnosis was Idiopathic length dependent axonal sensorimotor polyneuropathy. My life has changed radically, but thanks to a supportive loving husband I can still find joy in my life. My neurologist has me on 900 mg of Gabapentin daily. Also I wear compression socks. I thought the Gabapentin wasn't helping me so I stopped it for one week, and then realized my symptoms were worse. I have accepted my condition and just will have to adjust to my limitations. Happy I have found this website.

Hi Ray and thank you for your kind reply...
I have read lots of online stuff about different neuropathic pain , mine fits the autonomic type as my digestion is very poor.
I am still thinking some of this is a symptom of a circulation issue though.All my heart tests are OK and so was a recent chest xray however my hands and feet are always very cold,I'm lightheaded alot and have really bad pain after even eating a piece of toast.! My weight is stable but only because I eat tiny meals often and am no longer able to exercise. Conns disease complications are usually cardiovascular because of the damage caused by hypertension, and boy my BP was high! I don't feel I've had the appropriate scans to look at this though.My Gp doesn't agree though and neither does my gi Dr. I would have this scan done privately, however I need a Dr to refer me( angiogram) and he won't.... The frustration is enormous!!!! Thank you for reading this.....

Thank you for letting me in.

Welcome @jrzees1942, Beautiful rainbow photo! Do you mind sharing what brought you to Connect?