Living with Neuropathy - Welcome to the group

Hi @brub0117, Welcome to Connect. You are not alone with the numbness. I've had it for more than 20 years but didn't get a diagnosis because all my different primary care docs over the years said even if have neuropathy numbness there are not topicals or treatments that help. That was what brought me to Connect back in 2016 when searching for something that might help. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

Can't say that I blame you for not wanting to take more meds unless it's absolutely necessary. There is another discussion on the numbness only symptoms that you might find helpful:
--- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

You might also want to read through the discussion started by @ray666 which is about preparing for a follow up exam with a neurologist:
--- Preparing for a follow-up exam …: https://connect.mayoclinic.org/discussion/preparing-for-a-follow-up-exam/

Do you normally prepare a list of questions for upcoming appointments?

Hello, brub0117 (@brub0117)

Welcome!

I found Mayo Connect about two years ago when I was at a loss as to why my balance had become so unreliable. For many months I participated in some of Connect's other forums until only last August (2022) I received a diagnosis of idiopathic axon sensory/motor peripheral neuropathy. Like you, I, too, have no pain or tingling. Unlike you, though, I do not have diabetes. So far, in this past year, I've not noticed much in the way of progression. I consider myself very fortunate in that regard.

I have been trying to learn as much as I can about my neuropathy. There are several informative sites online. One that has provided me with plenty of credible information is the Foundation for Peripheral Neuropathy, both the Foundation's main or home site and its separate YouTube site. You'll find a library of video recordings of the Foundation's many webinars on the YouTube site. And I'm sure you'll receive additional recommendations for good sites from some of Contact's great mentors in the coming days.

My No. 1 reason for replying to your post was to say Welcome! Pull up a comfy chair, brub0117, and make yourself at home!

Cheers!
Ray (@ray666)

Hello @weezie4u2 and @llevy0081, I would like to welcome you both to Connect. It sounds like you are both looking for answers for your neuropathy symptoms. I can tell you that you are not alone. Nobody likes having neuropathy and regardless of all of the advertising you see, there is no one cure fixes all or relieves all. We are all patients here on Connect sharing our experiences and sometimes success along with things that have helped us get through the day. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

You may find it helpful to look through the list of discussions started by other members here in the Neuropathy Support Group to see if any of them sounds similar to what you have experienced - https://connect.mayoclinic.org/group/neuropathy/.

@weezie4u2, You mentioned having pins and needles in your feet, have you been diagnosed with neuropathy?

@llevy0081, You are wise to be cautious when viewing some of the businesses offering so called neuropathy cures. I went many years before seeing a neurologist because they told me there wasn't anything they could offer me to help with the numbness. Then when I was worried about the progression and decided I needed to see the neurologist. I was diagnosed with idiopathic small fiber peripheral neuropathy and the answer from the neurologist was the same, nothing we can do, which is when I first found Connect. In retrospect, I would do it again just because knowledge is power. The more you learn about your condition and possible treatments that may offer some relief for your symptoms, the better quality of life you can have.

To Weezie4u2, Yes, I have been diagnosed with neuropathy by my general practitioner, I had the tests done at the hospital. He didn't recommend a neurologist, and I haven't seen one. Thanks.
To John, l really don't know whether to see neurologist or not. It sounds as if he is just going to tell me there is nothing they can do. The hospital tests showed that I had a very bad case of it. I've tried Gabapen, it helped a little, but made me have cramps really bad. It seems pretty hopeless. Causing a little depression, which I've never experienced before. I have a very unsteady walk, even with a cane, and the pain is very disruptive. Hoping someone can come up with something that at least relieves it. Thanks

To Weezie4u2, Yes, I have been diagnosed with neuropathy by my general practitioner, I had the tests done at the hospital. He didn't recommend a neurologist, and I haven't seen one. Thanks.
To John, l really don't know whether to see neurologist or not. It sounds as if he is just going to tell me there is nothing they can do. The hospital tests showed that I had a very bad case of it. I've tried Gabapen, it helped a little, but made me have cramps really bad. It seems pretty hopeless. Causing a little depression, which I've never experienced before. I have a very unsteady walk, even with a cane, and the pain is very disruptive. Hoping someone can come up with something that at least relieves it. Thanks

@llevy0081, Have you looked at the Foundation for Peripheral Neuropathy's site to see if there might be some form of treatment that may provide some relief for you?
--- https://www.foundationforpn.org/living-well/

Hello.
My name is Tina and I am struggling with this neuropathy diagnosis which is from my Conns disease complications.It is soo difficult to be in pain all the time,I am looking for information to stop it getting any worse.
I am not diabetic, however Conns disease does cause you to feel hypo all the time and need to eat sugary foods which I'm trying to now avoid.The Dr prescribed pregabalin but for 3 days I simply slept day and night ,was horrendously lightheaded and felt like a zombie,even on a low dose ,no quality of life whatsoever Unfortunately the Conns disease does cause severe weakness as does my low vit d ,all corrected now.Its all the residuals I am now suffering from.I cannot believe this has happened to me, I was very fit and regularly walked 10 miles on a weekend until Conns struck.Along time to diagnosis,sadly.The frustration of being told is all in your head when you have a potentially fatal endocrine condition!! I find a hot bath really helps,hot water bottle and good friend to vent to.

Hello.
My name is Tina and I am struggling with this neuropathy diagnosis which is from my Conns disease complications.It is soo difficult to be in pain all the time,I am looking for information to stop it getting any worse.
I am not diabetic, however Conns disease does cause you to feel hypo all the time and need to eat sugary foods which I'm trying to now avoid.The Dr prescribed pregabalin but for 3 days I simply slept day and night ,was horrendously lightheaded and felt like a zombie,even on a low dose ,no quality of life whatsoever Unfortunately the Conns disease does cause severe weakness as does my low vit d ,all corrected now.Its all the residuals I am now suffering from.I cannot believe this has happened to me, I was very fit and regularly walked 10 miles on a weekend until Conns struck.Along time to diagnosis,sadly.The frustration of being told is all in your head when you have a potentially fatal endocrine condition!! I find a hot bath really helps,hot water bottle and good friend to vent to.

Hi Tina, I posted a link earlier in the discussion that you might find helpful here - https://connect.mayoclinic.org/comment/915885/