← Return to Anyone here dealing with peripheral neuropathy?

Discussion
rabbit10 (@rabbit10)

Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Sep 7 1:40pm | Replies (2194)

Comment receiving replies
@johnbishop

Hello @ridgerunner, I think we may be two peas in a pod with slightly different diagnosis. I’m also 73 and have had the tingling, numb toes & feet for over 20 years but ignored until this past March when I went to a Mayo neurologist and was diagnosed with idiopathic small fiber neuropathy. The neurologist thought it may be genetic but my living relatives are too far away to run tests. There can be many causes for neuropathy including chemotherapy and some drugs. I believe lisonpril (blood pressure med) was the cause of my SFPN. I took it for over 5 years in my 40s until I participated in a Mayo heart study and the cause/diagnosis of my high blood pressure was changed and I was switched to spironolactone and hydrachlorathyazide. It could also have been caused by me being pre-diabetic but I’m not fully convinced.

If you do not have the pain that goes with neuropathy you are one of the 20% or so that only has the numbness/tingling and not the pain that goes with it. I did not start being proactive until last March which is when I had an EMG and several MRIs before meeting with the Mayo neurologist. At that time I was still looking for the magic bullet and trying to avoid all the scams out there for people with our condition. After my neurologist told me there are no medications or topical creams/oils that will get rid of numbness I started doing my own research. First I joined the Minnnesota Neuropathy Association where I started my search. They had some resources on the website for things that have worked for some people with the caveat not everyone will be helped with each of the treatments so you just have to keep looking until you find something that works for you. There is also quite a bit of information on the Foundation for Peripheral Neuropathy’s website. I have similar problems with balance and driving. There are some exercises that will help with your balance. I will see if I can find the link and post it.

After the neurologist told me there was no magic bullet for the numbness/tingling I decided to step up my search and found several closed Facebook groups on neuropathy. I had joined a couple of them before finding one that works for me because they offer a solution where the other groups were more for support and sharing stories/diagnosis. This group https://www.facebook.com/groups/SPNPD/ – Solutions for Peripheral Neuropathy Pain & Discomfort has put together a protocol of supplements that will help with repairing the nerves. It may not work for everyone but they have a very high number of success stories and over 3000 members in the group, all with different PN and multiple other diagnosis. The group sells nothing and has recently obtained their 501c3 status which is a plus for me. I started taking the protocol in the first week in September 2016 and when I started the numbness/tingling was in both legs down through the toes starting just below the knees. It is now just above the ankles so even if it doesn’t total repair the nerves down through the toes I’m happy because it has reverse the progress of the disease. I also have polymyalgia rheumatica and it has been in remission for about 6 or 7 years but it came back this past August so I had to start taking prednisone for it. I’m currently trying to titrate off of the medication but it’s not going well so will just have to keep working on it.

I would recommend taking a look at the protocol and then discussing it with your neurologist or primary care physician.

Good luck and don’t give up, there is hope!

John

Jump to this post


Replies to "Hello @ridgerunner, I think we may be two peas in a pod with slightly different diagnosis...."

John,

I’ve been reading your posts for the past few months and you’re very knowledgeable about peripheral neuropathy. You also have a lot of good suggestions. As you may recall from an earlier post of mine, I’ve been dealing with tingling in my feet and legs since 1994. I was diagnosed in 2014 with idiopathic peripheral neuropathy by a neurologist in Minneapolis. I had had a nerve conduction study done and it showed that I had absent reflexes in both legs. I don’t remember which reflexes were absent. I told my neurologist that I thought I had small fiber sensory neuropathy (SFSN) and because of those absent reflexes, he said I didn’t. Since that time, I participated in a study at the University of Minnesota and was examined again by another neurologist who looked at my EMG results and said I didn’t have PN! He thought I had SFSN. I pointed out to him the absent reflexes, and he said my first neurologist had to find something “abnormal” in my results in order to get paid by the insurance company! Thoughts?

Anyhow, I’m now taking 1200mg of gabapentin, and it seems to help. It also does wonder for my back pain! I tried being weaned off of the gabapentin a few months because I didn’t think it was helping, but, surprisingly, it is helping quite a bit.

I appreciate any comments.

Hi Margaret (@magg),

Thank you for the kind words (not sure I deserve them though). I think it was a good thing to get a second opinion. The more questions you can ask your doctor will help you gain knowledge. The doctor patient relationship has to be one of trust and confidence. We patients can help by not being afraid to ask questions we may be thinking and to be our own advocate. Doctors (my opinion only) have to see x number of patients and realistically can’t be your advocate. They listen to how you describe your symptoms, have tests done, and use their expertise and judgement to give you a diagnosis. During my exam by my Mayo neurologist he did a good job of explaining the nervous system, told me what to expect, etc. He even took photos with his cell phone of my feet because he wanted to use them in a training seminar of what the typical feet of someone who has peripheral neuropathy look like (due to my hammer toes). It did make me laugh so I told him to go for it. I’m sure the second neurologist may be correct about the coding so it would be covered (and he would be paid) by insurance. I have had similar questions when trying to get my doctor to run extra labs. She told me they may not be covered by insurance and did I still want to have the tests done. I thanked her for asking me and told her to go ahead and run the tests which I needed to have to confirm results of supplements I am taking. I called the insurance company and they said as long as the doctor codes the charges to what you have/being treated for it would be covered by the insurance.

Here is some information on Johns Hopkins website on SFSN: http://bit.ly/2jYCuWw

Here is one of the best (and easy to understand) explanations of SFPN: https://youtu.be/S1qt-ueIP6U

My primary care doctor gave me a script for gabapentin which I took for about a month with no results. When I told her it wasn’t helping with my numbness she brought in another doctor on the PCP team and he asked more questions about my symptoms. After I told him I only have the numbness and tingling with my neuropathy, he said gabapentin doesn’t do anything for numbness. It only helps block the pain. I’m am not a doctor and have zero medical training but I have learned that knowledge is power and will help you make decisions and be your own advocate. Gabapentin was originally designed for antiepileptic therapy but is used in treating neuropathy associated pain. If you do a Google search on gabapentin side effects it will give you some idea of why I would be concerned.

Mayo Clinic information on gabapentin – http://mayocl.in/2iFvk7C

I believe that gabapentin, lyrica and the other drugs used to treat pain associated with PN do actually help with the pain but at what costs. The drugs do not address what is causing the pain (damaged nerves), they only mask or block the brain from receiving the pain signals. The fix is to repair the nerves but to my knowledge there is not a lot of research going into repairing damaged nerves. I did recently hear of study of from 2012 about Deer antler innervation and regeneration – https://www.ncbi.nlm.nih.gov/pubmed/22201810. I’m hoping that more research focuses on this aspect of neuropathy.

I know what seems to be working for me to reduce the numbness from just below the knees in both legs to just above the ankles. It may not work for you but if it enables you to titrate off of the pain medications I think it’s worth a try. As always, when you take supplements you should discuss them with your doctor/neurologist first. I did this and also had my daughter who used to be a medical secretary in neurology at Mayo run it by her top neurologist. She basically poo pooed the idea that supplements can help but the key point here is that she had no drugs that will help either. By help I mean fix or repair damaged nerves. If I had the pain, yes I would probably want the pain killers even as much as I hate taking any medications. But if there was an alternative and it would work – and it’s not going to hurt me, I would jump at the chance and I did.

This is what helped me –
https://www.facebook.com/groups/SPNPD/
I would take a look at it, read through all the new member welcome information, and discuss it with your doctor/neurologist.

I apologize for being so wordy. I hope that you continue to ask questions, do your own research so that you are able to ask even better questions when you discuss your diagnosis with your doctor and most important be your own advocate. Please keep us informed on any progress you make.

John

Hammertoes were mentioned. I had 4 toes “operated” on. It is like nothing – I continued driving to my errands after that. Could not go into a pool right away but, easy. If he had done the big toe it would have been a much longer recovery. More joints. I highly recommend this. Only occasional neuromas but, the After is great. Actually neuromas don’t seem to impact me any more, maybe it was the surgery – I don’t know.

You do not mention taking Vit B12.Also,you do not mention whether you tried Lyrica or Gabapentin or any traditional medicine!

WOW! 1200 mg sounds high, but it is not my PN. I take 300 twice daily and can go to 900 total.

I do take Vit B 12 shots. but not the other medicines.

Thanks for the info, John. I’ve read quite a bit on SFSN, and my symptoms are identical to everything I read on the disorder. I have no difficulty walking or moving around. Besides the gabapentin, I also take a number of supplements, including B12. That really helped the worst of the pins-and-needles and electric shock-like symptoms to dissipate when I had a flare-up a couple years ago. The only other issue I have is painful, sometimes disabling cramps in my feet and legs, mostly at night while at rest. But I think that might be a separate disorder from the neuropathy. I’ve heard from doctors that a lot of us “older folks” (I’m 67) have the problem, especially in the evening. It’s pathetic that no one in the medical community can offer any help to the millions of people who have these problems. For me, the cramps are worse than the neuropathy. I’ve tried OTC creams and lotions, taking Hyland’s pills, stretching exercises in the evening, massage, and even drinking pickle juice. Any other thoughts on how to combat the nighttime cramps?

I’m wondering if it might be as simple as not being hydrated? I’ve heard others in the neuropathy group talk about nighttime leg cramps when they don’t drink enough water. My wife gets them some nights and I will get up and get her a glass of water and then they go away after a few minutes. She also a picture of health which I am not…:-(

I drink lots of water throughout the day. The cramps seem to be a delayed reaction to exercise, of all things. The less exercise I get, the less I have cramps in the evening. Even simple walking is bothersome sometimes, but never while I’m walking. Cramping always occurs several hours later. I’ve read a little about this reaction, but I don’t think it’s very common.

I was taught this by a Vietnamese Dr.: Put on long, thick sox. And if sox only reach mid calf the cramp will go away under the sock and remain above the sock.

Do you think it could be low magnesium and or potassium levels? There is a lot of discussion in my neuropathy group about this causing some leg cramping along with hydrating. I drink a lot of the Zico no sugar added coconut water which has about 9g of sugar per 8 fluid oz – 45 calories. It has 440 mg of potassium and about 4% of of daily dosage of magnesium. I’ve been told that magnesium and potassium kind of go hand and foot together. I’m guessing this is probably not the cause since you sound like you are managing your diet really well now.

The other quirky item I’ve heard from folks that have leg cramps is to put a bar of white soap (Ivory) between the sheets when you go to bed. Sounds dubious to me but I’m a born skeptic. I will see if I can find any more info on the leg cramping – but if anyone else is reading this and knows of something please let us know what is working for you to prevent/relieve the leg cramps.

John

I’m guessing you have tried pretty much all of the over the counter stuff for the cramps. Another one that multiple people are using in my group are Hyland’s Leg Cramp tablets. They also have a PM version and an ointment. I’ve only had the bad leg cramps a few times in the past during the night and I’ve always been able to get up, get some water and stretch the leg to help with the cramp.

  Request Appointment