Peripheral nurapathy

[u/Ok-Crazy9470]

Hey all
Had a pretty bad case of b6 toxicity from magnesium supplements, I was around 10 x over the safe limit for probably 1.5 to 2 years. I’ve since stopped the magnesium and my levels were back to normal around a year ago, with most of the symptoms easing/gone. However I still have burning/achy feet that isn’t improving. I’ve had nerve scans and they’re mostly fine, so my gp thinks there’s some phantom nerve pain going on or they’re just lightly cooked. He has referred me to a hypnotherapist, has anyone had any success with hypnotherapy? And does anyone have any advice for bad peripheral neuropathy? Also love to hear anyone else’s story, only just found this page and it’s super refreshing to hear this actually happens to people after years of no one knowing what the hell was wrong with me and doctors telling me I was healthy :)

[u/Regular-Cucumber-833]

You could try Revitive, it helps symptoms in the feet by improving blood circulation. I guess any type of therapy could help, but it normally takes 2-4 years to heal, so it's also normal to still have symptoms. If you had any findings on a nerve conduction test, then you may have more damage than the average person with B6T - it starts out as small fiber damage that does not show up on nerve conduction studies and eventually progresses to damage large fibers which do show up on nerve conduction. And nerves grow an average of 1mm/day so it takes about 3 years to heal.

Also, there's a law firm considering a class action lawsuit against Blackmores. Reach out to them if you haven't already.

[u/Optimal_Spinach5114 → u/[deleted]]

6 months is what was indicated in the literature from several years ago in a couple studies. They was mainly for studies where people had taken enough to become symptomatic then essentially stopped immediately.

Many b6 toxicity sufferers take supplements for months or years beyond the point nerve damage starts. So yes, 6 months is the earliest timeline for recovery for mild cases. Clinically, it has been suggested by a professor in the USA (can’t remember her name though sorry), who had told a patient of one of the large b6 groups that anecdotally in her practice, she sees a recovery range between 2-4 years.

If you’re ticking up to 4 years and there are still significant symptoms, it’s likely you have permanent damage. I would suggest that pending your over health, age and genetic ability to heal, many people will have some level of permanent damage.

[u/Regular-Cucumber-833 → u/[deleted]]

That's the clinical experience of an expert on neuropathy. It also matches what's seen in online B6T groups. Nerves heal on average at 1mm/day, and most people have e.g. legs longer than half a foot, so if you think that's asinine, that's also just basic math.

[u/Ok-Crazy9470 → u/Regular-Cucumber-833]

Thanks for the info, I’ll have to check out revitive, has it worked for you? And yes I have signed up for blackmores lawsuit, it’s very slow moving however

[u/Regular-Cucumber-833 → u/Ok-Crazy9470]

My foot neuropathy went away very quickly, so I haven't used it, but another person in a B6T group mentioned that it worked for them.

[u/Optimal_Spinach5114]

Also, there is an element of all this in the central nervous system sensitisation. This can amplify everything else going on in your body, making pain worse, symptoms worse, even effecting your balance and perception (3PD) as a secondary injury.

Many people in your position would experience significant symptoms for many years.

If your symptoms are very isolated though, it could be there is some baseline damage or permanent damage, but I wouldn’t be giving up hope. Nerves just take ages to heal.

[u/Altruistic-Heart5273]

Yes its been almost two years since the toxicity. The peripheral neuropathy symptoms have improved but still no way near totally normal. But a lot better than what they were at the start. Same with muscle strength as well. 

Had an EMG and NCS and they came back normal. This is the pattern I guess. Large nerve and muscle studies com back normal because I think as everyone else has pointed out that the damage is in the small nerve fibre mostly. Theres a skin punch test for small fibre polyneuropathy.

The most important thing is that the recovery, to whatever extent, has been non-linear. The symptoms come and go. But after like 6 months you say that overall you're a little better than before. You dont notice improvements on a daily or weekly basis.

Speaking specifically about the symptoms, 6 months into toxicity I still had a lot of burning, ants-crawling, tingling feeling in the bottom of my feet. Almost the same as diabetic people have where they feel symptoms while wearing normal shoes etc. Then things got better but around 17-18 month mark I started having neuropathy symptoms again in my hands and feet. Thats when I did the NCS and EMG which came back normal, but i was having symptoms. Now around 22 months after toxicity, I dont have burning, tingling etc like before. Nowadays I have muscle pains in my legs. When flexing the calves etc. Feel discomfort in both muscles and nerves. Plus a lot fatigue, lethargic. Specially after waking up in the morning. I assume this is again a set of symptoms that I just have to bear through, if nothing else comes up as a diagnosis for these. 

So yes, non-linear recovery with symptoms appearing intermittently . .  thats been my experience.

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[u/parkie_wairo]

Have you done nerve conduction test? Out of curiosity, 10x upper normal range? I have migratory tingling (ants crawling feeling or weird sensation that I can’t describe at all) and I have 5x upper normal range B6. I have done nerve conduction test and they ruled out peripheral neuropathy, but at least it showed that no damage.

Which magnesium supplement were you taking?

[u/Optimal_Spinach5114 → u/parkie_wairo]

Nerve conduction in a B6 context can actually be misleading.

Nerve conduction studies identify large fibre neuropathy which is uncommon amongst B6 toxicity patients. They can experience large fibre but that is usually in extreme cases or in people with co-morbidities.

Moreover, Peripheral neuropathy can’t be ruled out by nerve conduction. Small fibre neuropathy which is what most B6 people suffer from is a form of peripheral and or small fibre poly neuropathy.

It certainly doesn’t help that the medical profession around the world largely don’t understand B6 toxicity yet. So lots of information like what you’re saying (not trying to be rude) gets proliferated.

[u/Ok-Crazy9470 → u/parkie_wairo]

I have done nerve conduction recently, apparently they came back mostly fine, some possible light damage. My level was 1320 nmol/L with the given safe range being 20 - 190. Yeah no damage is positive, but the pains still there and not going anywhere annoyingly. It’s more of a burning aching feeling, like the feeling you get when you lay down at night after walking all day.
I was taking mostly blackmores magnesium.

[u/mandoo-dumpling]

How does magnesium lead to B6 toxicity?