Living with Neuropathy - Welcome to the group

Hello. Wowzers, I'm usually the one who asks a million questions! Let me try to answer: I don't know that I've received a link from John Bishop? I think I have more than SFN. There's even large fiber neuropathy! I've had a few Neurologists over the years. Not impresses. Not much compassion and I don't know if my current is new in the field but seems to not know a lot. Doesn't have much to say. I have a PCP and many specialists, way too many! Intriguing that one can feel so numb they don't feel the backscratcher superficially, only if pressure and yet skin feels so sunburned it's torture to get touched there! All along the spine. I use 5
% Lidocaine patches. So expensive but work fairl well to make one not want to jump! Have had some minor itching, not a problem so far. Most distressing is constant unrelenting burning/stinging all over. I don't have any anxiety at all. I feel it is b/c I'm a woman of faith and walk very closely w/ our God. He has allotted me an extra measure of faith. I trust Him implicitly and know Him well via the bible. Nothing weird. I don't ever question my situation nor have I ever felt a victim. This is even when thrashing in bed, tears rolling, begging Him to take me now, b/c I know He had every day of my life planned before I took my first breath, Psalm 139:16. I have the peace of God that surpasses all human understanding through Christ, Phillippians 4:7. I'm extremely blessed. I know this life is temporary and no one goes one second before their appointed time. I'm not anxious but am in the highest risk as I'm on 2 immunosuppressant drugs, have autoimmune, heart, lung, kidney, thyroid, parathyroid, pancreas, adrenal, bone etc. diseases. Still, we have our human endurance and life is very difficult. Quality of life so diminished yet acutely aware of my innumerable blessings. I am deeply grateful. I wish it for all! Thank you and let me know if I can help in any way. Many blessings!

Sunnyflower, So nice to hear your testimony of faith in God and Jesus Christ. I am a fellow believer and fellow sufferer of PN - in feet and lower legs. Perhaps we can pray for each other on a regular basis? This life is temporary and suffering for Him is part of our walk of faith. Take care. Terry.

@sunnyflower

I would have ended my life years ago if it weren't for the assurance that God hasn't abandoned me. Depression and chronic, intractable pain work hand in hand, and acknowledgement of the mental pain is a big part of dealing with it, whether through prayer or counseling or learning all we can about our illnesses.

You said that you've been to a bunch of specialists. I understand about finding a caring, knowledgeable, competent neurologist. Are you close to a teaching hospital? Here in Oregon, there's OHSU in Portland, about 3 hours away, and I had a few appointments with their neurology staff. One benefit they have is that they can perform tests not available where I live.

Sometimes it takes seeing a number of doctors and specialists to find one that offers good advice. Having people like those here at Mayo Connect, who are experiencing some of the same things that we are, can help us keep things in perspective.

We're glad that you've joined us. I pray every night for the many suffering people here.

Jim

Good afternoon, @sunnyflower, Welcome to Connect and especially to the discussions about Small Fiber Neuropathy SFN. The link that @johnbishop gave you has important information.

I have read your new member posts and have the feeling that life is quite confusing for you. If I didn't know better I would think that you were dealing with as much as any three people with SFN. Who have you chosen for your clinician.....neurologist, pain management specialist, endocrinologist, a dermatologist?

Do you have a PCP, primary care practitioner to help you make lists of your symptoms and treatments? I think there are a lot of folks out here with at least some of your symptoms?

At this point, i have 3 clinicians who collaborate when necessary. Recently I had a very serious attack of SFN itching so I identify with your statement about itches that don't respond to a back scratcher because the area is numb from SFN. I have another telemedical appointment with my dermatologist on May 14 to try to come to some conclusion about how to avoid the itching or at least treat it quickly. I will be posting the results and the medications.

What on your list of symptoms is the most distressing? Do you think that the seriousness of your symptoms are in part a result of anxiety caused by the COBID-19?

May you be free of suffering and the causes of suffering.
Chris

@sunnyflower

I would have ended my life years ago if it weren't for the assurance that God hasn't abandoned me. Depression and chronic, intractable pain work hand in hand, and acknowledgement of the mental pain is a big part of dealing with it, whether through prayer or counseling or learning all we can about our illnesses.

You said that you've been to a bunch of specialists. I understand about finding a caring, knowledgeable, competent neurologist. Are you close to a teaching hospital? Here in Oregon, there's OHSU in Portland, about 3 hours away, and I had a few appointments with their neurology staff. One benefit they have is that they can perform tests not available where I live.

Sometimes it takes seeing a number of doctors and specialists to find one that offers good advice. Having people like those here at Mayo Connect, who are experiencing some of the same things that we are, can help us keep things in perspective.

We're glad that you've joined us. I pray every night for the many suffering people here.

Jim

I am living in the south of the netherlands and had for about two month a strange phenomena 'tingling hands', mentioned to my GP and he asked for a blood test; result was 'vitamin B6 (pyridoxine) too high ' (in the netherlands limits 59 - 179 nmol/l) in my case 308 nmol/l so the obvious reason was the B6.
He asked me if i was using supplements , and nearly forgot the Nutrof , a supplement for a possible Macula preventive treatment - never thought about this containing vitamin B6.
So i stopped immediately , but even after 2 month i still have tingling hands ; what i saw in different discussions that it could take very long to get rid of this nasty problem. Is this normally the case ? Even over 6 month to years ? Is there something can be done to speed the process a bit or to handle it better.
Thanks for any info.
Henk

Hello Henk @tys, Welcome to Mayo Clinic Connect. You may be interested in a post I shared in another discussion here on Connect -- B-6 vitamin danger: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/ where I posted the following information:

Livestrong.com – How to Lower B6
— https://www.livestrong.com/article/522968-how-to-lower-b6/

Detox From Dangerous Supplements and B6 Toxicity
— http://www.drorestesg.com/blog/detox-from-dangerous-supplements-and-b6-toxicity-

Linus Pauling Institute » Micronutrient Information Center B6
— Food sources of B6: https://lpi.oregonstate.edu/mic/vitamins/vitamin-B6#food-sources
— Fact Sheet for Consumers: https://ods.od.nih.gov/factsheets/VitaminB6-Consumer/

I have no medical training or background but think it probably didn't happen overnight so it will take awhile for the B6 levels to return to normal. Here is another good site for an explanation:

B6 section it explains -- too much or too little gives neuropathy
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

You mentioned it's only been 2 months since you stopped taking the supplement. Are you taking another other supplement like a daily vitamin?

Thanks for the quick respons .
Nothing, no supplements , just the 'normal' pills for a 75 year old male 🙂 (statine / blood pressure)
cheers, Henk