Living with Neuropathy - Welcome to the group

Welcome to the numbness with no pain group. I am now 85 and had to stop driving about 5 years ago. Now I have to rely on my wife to do all the driving. My neighbor uses hand controls for driving and it works for him.

Hello, I am new to this group.

I probably already had several light symptoms for more than a year, and problems in my left foot for over 40 years as result of an old accident. However, driving home last week from a seminar in Brussels, Belgium, to my home in the Czech Republic (700 miles spread over two days), I got strong numbness feelings in the outer toes of both feet, and itching under my soles and the front of my lower legs. No pain.

Compared with most here on this forum (and my wife after a light chemo treatment) probably not yet that shocking but it scared me, especially the sudden onset.

My doctor did some test (CRP, strep-test, COVID, blood pressure) but all was in the green. She did not do a blood test but decided to give me a vitamin B complex mega-dose treatment for 14 days to see if that helps: all B vitamins at 100% recommended daily value per tablet, 6 tablets per day (??).

As background, I had a rather intensive work period behind me (running a non-profit with two visitor centers) and had been traveling abroad as well. Coming back from a week-long conference (traveling in cramped airplanes and driving the last bit), I ended up with some severe stomach problems the next night and day (diarrhea, cramp, but no nausea, vomiting, or fever). A day later I started driving 700 miles over two days, then one day seminar, then another two days driving back. As you can imagine, with irregular eating while traveling my stomach has not completely recovered from this ordeal, and my doctor suspected that a viral infection combined with bad food uptake and cramped seating has created or worsened this problem.

Although living here, I am not a Czech and do not really have 100% confidence in the medical rituals here.

Is such a mega-dose treatment normal in such cases? Especially the 1200 ugm B9 per day seems rather a lot.

Additional info: 66 year old, pre-diabetic on 500 mg metformin per day, and light non-allergic asthma (never had an attack, just an initial extreme high FeNO) with minimum maintenance (1x 1 inhalation symbicort in the morning). Had Covid at least twice, probably three times, no serious effects although the attack in January 2021 was also one day stomach problems, this time with a bit nausea and medium fever and after that problems in the ENT domain (normal for me, but these effects were strange). Had both vaccinations (Moderna) and the booster.

Welcome @robomcd, I take a lot of B vitamins also but not the B complex in addition to other supplements that help nerve regeneration (if it's going to happen 🙂). I also only have the numbness and some minor tingling with my neuropathy. I shared my story in another discussion here:
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/

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/

Sorry I don't have an answer to your question on are mega doses helpful. I'm thinking that it really depends on each person and possibly whether or not they have a vitamin deficiency or absorption problem. There is some information on the supplements that help on the Foundation for Peripheral Neuropathy website here:
-- Complementary and Alternative Treatments:
https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf
You mentioned you are on 500 mg metaformin daily. One of the serious side effects of metaformin is nerve damage. That might be a good discussion with your doctor to see if there might be alternatives.

"Can metformin cause nerve damage?
Long-term use of metformin is associated with malabsorption of vitamin B12 (cobalamin [Cbl]) and elevated homocysteine (Hcy) and methylmalonic acid (MMA) levels, which may have deleterious effects on peripheral nerves."
-- Association of Metformin, Elevated Homocysteine, and Methylmalonic Acid Levels and Clinically Worsened Diabetic Peripheral Neuropathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2797962/

Are you able to discuss the symptoms with your doctor as a possible side effect of metaformin?

Thanks, both for the quick reply and for the answers.

This metformin might indeed be part of it, I will discuss it, although I am quite happy with using it.

I normally take a "vitamin and minerals" supplement adjusted for over 50s. Not daily (mostly I forget) but several times per week. This last few months, I mostly forgot about them, and as said, my eating habit was not that regular. Besides, I like to drink a glass of white wine or two with dinner most evenings (very rare beer or strong alcohol, don't like it).

Combined with the stomach problems during the year (including view days not eating due to gal stones) and a COVID infection etc, low Vit B sounds plausible. I will look into it.

My main question now is if the amounts of especially Folic Acid (vit B9) of 1200 microgram per day and Niacin (vit B3) of 96 mg per day is not a problem if taken only for 14 days. If there is improvement, the doctor suggests after 14 days we will slowly lower the doses.

So my PN has been gradually getting worse over the last few years and I have been having stomach and bladder issues as well which my doctor is sending me for tests for. I was doing some more research today and found this… Also, I was reading one gentleman’s post saying that something in his high blood pressure medication caused his. I am on 2 different meds for high blood pressure, so now I need to look into that. Omg what’s next?

Greetings @kristin8. Welcome to the "neuropathy group" and to Connect. We love having you be a part of our sharing mission. We know that knowledge, especially about our own condition, is power. And so here on Connect, you can learn so much from others about your Periferal Neuropathy. And it helps when you also share your experiences.

The diagnosis clip is somewhat accurate but not quite everything. One thing I have learned is that even though we may all have a similar diagnosis, our symptoms, causes, and medication responses can be widely different. It is great that you are reading and researching.

Here are a couple of helpful sources for current information.
The Foundation for Peripheral Neuropathy
https://www.foundationforpn.org
Neuropathy Commons
https://neuropathycommons.org/
Have you been given a diagnosis? Was it the result of a skin biopsy? Many folks who have diabetes or have received chemotherapy seem to end up with some form of neuropathy. Others have to settle for an unknown cause or idiopathic. For example, mine is related to trauma which includes falls, injuries, and way too many surgeries.

My personal diagnosis is SFN (small fiber neuropathy). I have had it since 2013 and have been through many phases and quite a few medications and treatments.

You mention stomach and bladder issues that accompany the usual numbness, tingling, and pain. How are you handling those accompanying symptoms?

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

Thank you for your reply. I am still getting tests done. I’ve had scans on my feet, ankles and hands. They did an emergency ultrasound on my thighs to see if I have a blood clot. I go for another ultrasound on my bladder after work today and have had blood work but still need to go for one more blood test. I am on lyrica now switching to Gabapentin for nerve pain, I also take two T1s, 2x a day to manage pain. I take B12, Vitamin D, & Magnesium along with my 2 blood pressure meds and Thyroid meds.
Thank you,
~Kristin~

Hello @kristin8. I would like to add my welcome along with @artscaping. You will notice that I have moved your post into an existing discussion for new members, which you can find here:
- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

What other testing are you having done?

Hello I’m Joyce

Testing for my lung cancer or my neuropathy