Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
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I have been to many neurologists and cardiologists over the past 5 years in my home state, Hawaii, also in Washington State, California, and next will be in Arizona, trying to find a way to slow the progression of this peripheral neuropathy and some ominous changes in my heart and other organs. Now both arms are in braces for carpal tunnel syndrome and walking is no longer possible due to the lack of feeling in both legs. The latest doctor was the first to test my Kappa and Lambda light chains (along with protein in urine, and other related tests) and it appears to be amyloidosis. However, I won’t know for sure until I get to the Mayo Clinic and have the hematology tests and biopsies done. If you are having a problem with PN that goes beyond RLS, have you asked your neurologist about checking on your free serum light chains?
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Thank you – What is RLS stand for? I would love to go to the Mayo Clinic but my insurance will not pay for my visit since there are doctors I can use locally. I may change my insurance in December so I can see someone at the Mayo Clinic. THANK YOU!
RLS = Restless Leg Syndrome. Best thing you can do at this point is to Google that term and read about it in depth. Especially the pros and cons on the two main medications used to treat it: Requip and Mirapex. I have done both of them and I am on Mirapex now for several years.
Liked by John, Volunteer Mentor
Hi I was just diagnosed with peripheral Neuropathy. I don’t have an appointment with Neurogist until August 31st.
Hi Jim (@jimhd), I’m really happy to hear the spinal cord stimulator is giving you some relief from pain. If it works it is so much better than the drugs used for neuropathy pain symptoms. The drugs just mask the pain and a lot of the times you have to up the dosage to keep the pain at bay. They really do not address the problem – damaged nerves which cause the pain signals to be sent to the brain.
I do not have the pain but I have had the numbness in my feet and legs for over 20 years. It was only last year when I started being more proactive that I became aware of how the drugs work. Because the numbness was just below my knees I started to worry and I asked my doctor about lyrica (you know all those TV ads glorifying it) for my undiagnosed neuropathy. She put me on gabapentin and after a month I went back and told her it wasn’t doing anything for me. She had a consult with the Mayo primary care doctor team and another doctor quizzed me on my symptoms. When I told him I didn’t have any pain but only the tingling and the numbness, he told me the gabapentin (generic lyrica I think) only addresses the pain and does nothing for the numbness. My primary care doctor had me get a couple of different MRIs and the EMG before I could see the neurologist. After I met with him, he diagnosed that I had idiopathic small fiber peripheral neuropathy and I was one of the “lucky” ones that only had the numbness symptoms without the pain. He also burst my bubble by telling me there are no topicals, creams, medications that will address numbness. I left that appointment pretty depressed and started my search to learn as much as I can about my SFPN.
I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it’s up to you to do your own research and avoid scams. Fortunately there is a lot of information on how to avoid scams but it’s out of sight, out of mind for a lot of folks. Here are the ones I’ve used:
Quazar’s wonderful guidance about avoiding scams and snake oil cures:
FDA’s HEALTH FRAUD PAGE
You can also link to this great resource from NIH’s National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
That said, I have found something that works for me and has helped a lot of folks with PN get off of the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was pretty high and thought it should be less. But again, I’m the one with the health issue and it’s my body so I took his input and did some further research and found that it was within guidelines of the numbers for omega 3 supplements for treating what ails me according to information on the Mayo Clinic’s website:
This is the website for Facebook Group I found – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://solutions2pnpd.com/. It has been a blessing for me to find the group. I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I haven’t made any more progress since December but I’m OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Others in the group with pain that had them bedridden have reported they are now able to live a normal lifestyle and have been able to taper off the drugs once they were on the full protocol and started feeling better. If you do decide to take a look and join the group, please read all of the information.
Hoping all of my neuropathy friends find a treatment that works for them!
Liked by Teresa, Volunteer Mentor, Jim, Volunteer Mentor, morninglory, Darlia ... see all
Have had it for 13 years. It sucks!!!
Restless Leg Syndrome
Why are your arms in braces? Carpal Tunnel Syndrome is just in your wrist.
These braces are like fingerless gloves that loop over the thumb, cover the palm of the hand, wrist, and about half way to the elbow. Hard base to keep the wrists straight combined with three adjustable velcro straps to keep the brace in place. Like trying to do anything with boxing gloves on. My caregiver massages in the kush creme on hands, knuckles, and wrists each day and then straps these things on me. The ointment kills the pain. I take the braces off for a few minutes at a time to be able to use my PC, but then back on again. The doctor insists I wear them 24 hours a day! She sent me to a specialist to have them fitted. Imagine trying to sleep with those things on – it’s not easy. Also not easy to control my wheelchair with only the thumb and forefinger to use on the controls.The pain (without the creme) runs from the palms of my hands up past my elbows. I apologize the the long whine. It’s just that this is the first time I have found a message board where I can meet others who have this disease. I went to the Amyloidosis Organization conference last weekend and discovered that most of the others there had not yet reached the point in the progression to have carpal tunnel syndrome and most were still ambulatory enough not to be in a wheelchair yet,
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
Medical marijuana has given me an almost pain free life after years of doctors putting me on opioids. I get the CBD oil capsules which is NOT hallucinogenic at all. I take one each morning with breakfast. And I got a jar of the ointment to massage any ‘hot spots’ that occur. When I get that sharp pain in my leg or shoulder, I rub it in and the pain is gone in 10 minutes.
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor
I am dealing with neuropathy in my feet and finger tips. I take lyrica daily. Have a problem wearing shoes. My neuropathy came from chemo treatment. Would like to know if anyone can recommend help.
Hello @user_ch1df4426, when you have peripheral neuropathy it’s really important to take care of your feet because you can’t feel them. You probably already know this but just in case there is more information on the following Mayo Clinic page:
I wear socks during the day and at night which helps if I step on something that injures the foot…then I can tell it by the socks. Also, I try to wear shoes that have plenty of toe room which seems to help. Hoping others can jump in if they have some stories to share.
While I don’t have chemo induced neuropathy and I do have small fiber peripheral neuropathy with no pain, only the numbness. I take some over the counter natural supplements and vitamins that have helped me. I found it in a neuropathy support group on Facebook. Others in the group that also had chemo induced neuropathy have shared that it has enabled them to get off pain medication once they had been on the supplements for a few months. When trying alternative treatments you should always have a discussion with your doctor first. You can read my story from an earlier post here:
Liked by Teresa, Volunteer Mentor
I have been wearing socks day and night because my feet hurt if they have contact with shoes or bedding, and I never walk without slippers or shoes, and I’m learning which of my shoes I can walk around stores in, and which ones I can’t. I’m really thankful for my handicap placard, as it saves me a lot of steps.
When I sit in the recliner, I have to use a footstool so my feet don’t just hang off – I’m tall – because that makes them hurt.
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor, georgiegirl
As a matter of fact I have recently been diagnosed with the FGFR3 ANTIBODY (rare) which is the CAUSE of my peripheral neuropathy now I am told.
Also have Gastroparesis because of this ANTIBODY. Neurotically my stomach nerves don’t work properly and it takes my stomach 5-6 x longer to digest
I posted a post titled FGFR3 ANTIBODY, for those interested, please go there and leave me your comments.
Just knowing the CAUSE now starts to feel a little better.
Welcome to Connect. I moved your message to this discussion thread in the newly formed Neuropathy group so that you can meet other members who are living with and talking about various types of neuropathy. Thank you also for posting a separate discussion about FGFR3 antibody causing peripheral neuropathy. For those interested, please see Darlia’s post here:
– FGFR3 ANTIBODY https://connect.mayoclinic.org/discussion/fgfr3-antibody/
Liked by John, Volunteer Mentor, Darlia
Wow, Your post is the first one I have seen that mirrors some of my symptoms. It’s difficult to explain these problems to anyone who has no clue what we’re talking about. I have to sleep under bedding that is not tucked in so I can stick my feet out. I have less pain when I am wearing socks. I need to wear slippers or shoes at all times for comfort or to prevent injuries (I stubbed and broke my little toe a few months ago). But I don’t like wearing shoes because after a while they make my feet burn and tingle with electricity. Learning which shoes to wear and when is always a concern. Your recliner statement was the kicker – I can’t have my feet hang off a chair; they must be in contact with something when I’m sitting. Otherwise the stinging and electricity set in.
When I am in the passenger seat in a car, I can’t keep my feet flat on the floor (too much pressure?); they have to stretch out in front of me and connect with the incline up front, and I have to move them around a lot. Thanks for confirming that perhaps my symptoms are real. What to do about them? That’s another story.
Thank you @colleenyoung. I am looking for answers to fight this without using the recommendation of my neurologist to be treated with IV Solumedrol steroids for what he claims will slow the progression. He claims that then after 2 years, I will start to notice some either improvement or at least the slowing of the disease. Am only 58 yrs old and I started having the numbness in my left calf on the outside of my leg when it began. It started as just a small area about the size of a quarter. It was the strangest thing because it was just numb all of a sudden. That was in 2011. Now there’s numbness in both heels and parts of my feet and toes. I’ve started having more tingling in my fingers and hands lately and two weeks ago started occupational therapy for the fact that I’m always dropping things.
I used to be on 900 mg of gabapentin 3 x a day! I told my neurologist that I wanted to wean off of it because since I’d started it 2 1/2 yrs prior, it had contributed to 40 lb weight gain which I want to lose and I didn’t want to be on so much medication. I have fibromyalgia too and it did help with that pain so I kept taking it. I had asked my Dr if I would have to be on it for the rest of life and he had made it sound like I had no choice! He says “this is your new norm!”.
So I’ve been off of it now for a week and I am hoping to our find something natural for pain. The neuropathy is only the numbness and tingling, but the pain from Fibro, Osteoarthritis and oh forgot to mention, pelvic floor disfuntion.
So my main mission is to fight, but also in my journey if it helps others to fight too, that will be a good thing.
I am thankful to find this Mayo Clinic Connect for whatever help is out there by sharing of information. Thank you to you and the other mentors. May God bless you!
Liked by Colleen Young, Connect Director, John, Volunteer Mentor, Jim, Volunteer Mentor, barbarn
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