Living with Neuropathy - Welcome to the group

@bugs

If you read prior posts, you'll see how others of us deal with neuropathic pain. I know too well how unbearable it can be. A spinal cord stimulator implant has reduced the pain in my feet by 80% or so, so when they are hurting now, I think about how bad it was pre-implant. I'm feeling the effects of neuropathy in my hands, so far only to the extent that I wear leather gloves when I drive to ease the achy discomfort from holding the steering wheel. Doctors tell me that my swallowing problems and urinary/ED issues are also likely to be related to neuropathy. I don't know how many other parts of the body can be affected - that would be interesting to research. The first doctor my pcp referred me to was a neurologist, who diagnosed my idiopathic peripheral neuropathy, and began looking for an effective treatment. When the pain became really intense, I started seeing a pain specialist, who knew of other medication options, and eventually referred me to a surgeon who eventually, after a ridiculously long, slow process, did the implant, which addresses only the pain in my feet.

In my experience, and from the reading I've done, there are many, many medications that specifically treat neuropathy pain, and there are many others that treat it secondarily, and it can take a very long time of trial and error to find the one med or the combination of two or more meds that will work for you. I seem to be treatment resistant to all of them, as well as being treatment resistant for depression. MM (medical marijuana) has helped many people, but because I can't afford anything not covered by Medicare, it's not a viable option for me.

Jim

Hi @bugs, thanks for the additional information. I currently experience the same "inconveniences and discomforts". The swallowing issue has become more prominent. I do want to let folks know that eyes can also be affected because dryness, as in dry mouth, dry eyes, and other tissues is part of neuropathy, especially small fiber neuropathy. There are thousands of nerves in networks throughout the eye according to my ophthalmologist and when they don't do what they are supposed to do...like hydrate the eye...then cells are lost and difficult to replace.

I was diagnosed with neuropathy when I was diagnosed with spinal stenosis with myelopathy. I have had 11 spinal surgeries. My 3rd ACDF left me with a spinal cord injury after the graft fell out and crushed my spinal cord. I now have an incomplete permanent SCI from C5-C7. The neuropathy has worsened over time since then. I also went through treatment for breast cancer which caused an increase to my neuropathy symptoms. My neuropathy is in both feet, numbness, tingling, pain, feeling of walking on a wet floor, up through my legs with numbness and tingling. My hands and fingers are also neuropathic, same symptoms as feet. Neuropathy hit my left chest wall, shoulder blade, left arm after radiation treatment for breast cancer. Lots of numbness and tingling. After my SCI, I've had no ability to regulate my temperature which is complicated by my hot flashes from cancer treatment. I also have lots of memory issues and difficulty with recall. I've tried lots of supplements and so far nothing has worked. The last 2 neurosurgeons I have seen didn't provide much hope for repair or recovery at this time. I've been in therapy for the cancer, we work on issues I have related to the spinal cord condition, too. So far, no success. I look forward to hearing from others who may have gone through the same thing, or something similar.

Hello Vickie (@vickiekersch), I would like to welcome you to Mayo Connect. I can't begin to imagine all the struggles you are going through but I am very glad that you searching for answers. Connect is a good place to start and it will help you find others with similar health concerns and learn what they are doing for treatments. While I also have peripheral neuropathy but my story is pretty tame compared to yours. I too have done a lot of searching and tried just about everything until I found something that works for me. When it comes to neuropathy "cures" one has to be careful and do their own research. You can read my peripheral neuropathy story here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985

I am tagging a few other Connect members to see if they can provide any information that might be helpful to you. @predictable, @jimhd, @kathyv, @carol94, @briansr do you have any suggestions for Vickie?

John

Hi, Vickie @vickiekersch

I have peripheral neuropathy, as well, though it's not related to any other of my ailments. I had a spinal cord stimulator implant in May, and it has helped immensely, reducing the pain by around 80% as a rule. If I wear shoes that don't cushion my feet enough, or if I walk or stand too long, my feet hurt a lot with burning pain. The numbness and tingling are still present. I'm having a bunch of tests done right now to see what type of neuropathy I have.

I've worn gloves when driving for quite awhile, because my hands ache from holding the steering wheel. I also have swallowing problems, which are probably related to the neuropathy, and urinary problems, as well. I don't know what other parts of my body will be effected when all is said and done.

I'm constantly amazed by how many health issues and how much chronic pain people live with. Each of us has unique reasons for pushing ahead. I often feel guilty for complaining about the pain I have, when others keep going with far more.

I don't think I added anything new to what you already know, but I wanted to let you know that I and many others are here to listen and support.

Jim

My name is Delane Humphries, I have mild neuropathy in lower legs and feet. I am on nadolol. my legs jerk sometime and I also lose my balance at times. I am fearful it will get worse and am trying to " prevent" that???

Hello Delane @homdee3041, welcome to Mayo Connect. We are happy that you found us. Connect is a good place to ask questions, share your health concern and learn what others with similar health problems are doing for treatment. Are you able to share a little more about your neuropathy? Have you seen a neurologist and received a diagnosis?

John

John

I agree with John and especially since you feel that your PN is mild (maybe it is still early enough for some kind of help from neurologists) My own feeling is that there are so many causes, so many levels of progression, so many areas of the body often affected, that the disease isn't clearly defined. As such, I think the medical community has not come up with a definitive cause, cure or even diagnosis. I hope the doctors who deal with this nasty disease read the blogs sent in by us and are able to add to their field of knowledge as a result. We've tried everything from bars of soap between bed sheets to using cannabis - some things help but so far no miracle cure.

For Connect members, families and friends in the Minneapolis area, the Minnesota Neuropathy Association is holding their next meeting this coming Saturday.

Saturday, September 23, 2017
MINNESOTA NEUROPATHY ASSOCIATION

Speaker: Dr Leland Scott:
10:00 am “Vitamins and Supplements” with time for Q and A
11:00 am “What Peripheral Neuropathy Is and What It’s Not” with time for Q and A
*Come at 9:30 for refreshments! – coffee, juice, fruit and pastries

Dr Leland Scott, neurologist, has been with the Minneapolis Clinic of Neurology since 2002, and works mostly from the Burnsville office. He did his undergraduate study at Stanford University in California, and his graduate study at Washington University in St Louis. His residency in neurology was at Johns Hopkins Hospital in Baltimore, Maryland. Over the years he has been involved with scientific publications, and was principal and co-investigator for several grants with various protocols.

Meeting location:
St. Michael’s Lutheran Church
9201 Normandale Boulevard,
Bloomington, MN 55437

John

Hi, Delane @homdee3041

It's been more than 5 years ago since a neurologist diagnosed my idiopathic peripheral neuropathy. In case you don't know, idiopathic means they have no idea what the cause of my pn was. At the time, I just had tingling in my feet and legs up to my knees. The burning pain started a couple of years later, and progressed to the point where I was in constant pain. I had a spinal cord stimulator implant in May, and it's reduced the pain by around 80%. Standing on a hard surface for more than a few minutes, or walking any distance on hard surfaces will remind me how much it used to hurt all the time, and how far I've come.

PN seems to be different for everyone, and as far as I know, the treatment is pain management. For some people, it becomes disabling, for others, it's limited to tingling and numbness, which is no fun in itself. A good neurologist will order tests.
I've started looking online at the reviews of the possible doctors. There are several websites.

I hope that your pn won't get any worse than it is, and that you'll find a great neurologist. (My favorite one retired.)

Jim