Living with Neuropathy - Welcome to the group

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.

I contracted neuropathy midway through chemotherapy treatment last year. Initially, the symptoms were mild although annoying. I completed chemotherapy in November 2022 and the symptoms have progressively worsened. It affects both my hands and feet causing discomfort, imbalance and difficulty in walking and in using my hands and fingers for even simple tasks. I have tried a number of treatments including acupuncture, medication, both conventional and Chinese. I also entered an expensive treatment clinic that uses LED light therapy, bio electric impulsing, ultrasound and stem cell injections. I exercise regularly and maintain a balanced diet. After 8 months my symptoms have only very marginally improved. My oncologist referred me to a Neurologist who told me that I should wait until 12 months after my last chemo treatment and then reassess then. I am very frustrated with my condition and the inability to find treatment that provides any noticeable relief.

Hi Linda, You have had this neuropathy for a year? And you say you have trouble walking with this. My case is very different. It started in my thirties but it was infrequent then. Only in my fifties did it increase in frequency. Now it is a nocturnal problem every night, I am 82. But it does not bother me during the day. So it developed slowly, to say the least.
For your experience, with such a rapid development, it sounds very different. But in my case if I eat very carefully, having sufficient protein and low amounts of sugar and carbs, plus exercise in a moderate way with good foot support--then this neuropathy lessens. On a rare night it hardly bothers me at all. Usually when I am exhausted and have eaten properly, lightly.
For the muscle cramps valium has helped but my doctor is strict about the use of it so walking around is the other cure usually, but valium is more thorough, more gentle. Fortunately the cramps do not happen often, usually they occur because of rigorous exercise in the daytime.
Maybe your doctor can help with the neuropathy.

Agree about those videos
So disappointing. My pain developed month or so post stroke in 2018. Neurologist explained that central pain syndrome from stroke doesn’t respond to most treatments
We tried all kinds of meds, including anti depressants,
anti epileptic/ convulsants,
Acupuncture, medical marijuana..no effect. Constantly researching entire left side of my body has pain, tingling, burning/ freezing sensation
It’s not peripheral neuropathy
So treatments for that don’t apply. Any suggestions appreciated and hoping for relief for everyone

Welcome @michael3147, I'm sorry to hear that your chemo treatment caused your neuropathy. There is another discussion you might find helpful:
--- Chemotherapy-induced neuropathy: What helps get rid of it?:
https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/.
Here are a couple of resources you might also find helpful:
--- Managing Neuropathy - Do You Have Nerve Damage?: https://www.cancercare.org/chemo-side-effects
--- Webinar: Chemo-Induced Peripheral Neuropathy: https://www.foundationforpn.org/webinar-chemo-induced-peripheral-neuropathy/.

I think I would be totally frustrated myself being told to wait for 12 months after my last chemo treatment and then reassess my symptoms. Has your oncologist for doctor suggested any ways you might manage the symptoms?

Thank you for hug
and sending hope and prayers to all

Hello, vy0081 (@llevy0081)

About a year and a half ago, I had the same question: Should I see a neurologist? I began having balance problems several years ago, but the episodes were brief, and I thought the result of hypertension. (I'd been taking medication for hypertension at the time.) Gradually, the episodes grew more frequent and longer in duration.

Finally, I mentioned it to my primary doctor. (Three years ago?) That began a series of workshops with various physical therapists. Each believed my troubling balance was due solely to advancing age. The workshops helped, but only "so much." That's when I started to ask myself: Should I see a neurologist? My primary doctor was quick to refer me. My first visit was with a neurologist's PA, who had me get a brain MRI. The brain MRI didn't show much, other than 30 years ago being a pretty heavy social drinker. Next came a cervical MRI, which revealed some "borderline" intrusion on my spine. I was sent to see a neurosurgeon, who agreed the intrusion was "borderline" but not requiring surgical intervention.

It was then, still having my balance difficulties (no pain, however) and frustrated at having still no idea what was wrong, that I asked my primary doctor if she knew of a local neurologist who took a more holistic approach to treating patients. (I had wondered if there might be a doctor who took a more holistic approach because of my other medical "issues": severe flat feet, one prosthetic knee and the other knee chock full of arthritis, and an arthritic hip.) It was then I first learned of "physiatric medicine," a neurological specialty using a whole-body approach to diagnoses and treatment (think: physical rehabilitation).

Luckily, there was such a doctor – a whole clinic – in my area. So I met with another neurology practitioner (the physiatrist) and had an EMG exam on my second visit, which led to my diagnosis of idiopathic axonal sensory/motor peripheral neuropathy.

I mention all this only to show how long it took me to go from puzzlement and self-diagnosis (those early balance episodes) to finally have a diagnosis that makes sense and upon which I can plan (and accommodate, as necessary) my future. I wish you the very best!

Cheers!
Ray (@ray666)

Hi, I just found this group. I have been dealing with foot numbness for many years after 3 lumbar back surgeries. I have no pain or tingling. It just feels like I am wearing socks all the time. I still have some feeling in my feet. I have developed diabetes that I am under a doctors care for and started taking Ozempic 6 months ago. My numbers are improving so that's good news. I am trying to get an appointment with a neurologist at the suggestion of my PCP. My concerns are that the numbness may affect my walking stability and my driving. I'm curious what treatments, if any, may be available. I do not want to take any meds if at all possible. I'm a senior citizen and on enough meds already. I'm trying to gather as much information as possible before I see the neurologist so any info you all can provide will be appreciated.

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)