Hail Mary approach to neuropathy

[ABC852031]

The neuropathy started last autumn. Turned out I had low b12, low vitamin d, MGUS and low IgA. Despite intensive b12 by injections, folic acid and vitamin d treatment all of which I'm still receiving, the parasthesia is still spreading. It extends up both legs and both arms now and is accompanied by weight loss and rapid ageing of my skin (although I am 60). I went gluten free a fortnight ago because I'd heard gluten is bad for anyone with neuropathy. The neuropathy is still worse each day but my digestion is now almost perfect and I feel strong. No more constipation and reflux has improved. Stools though are now a sandy colour, I still can't gain weight and the parasthesia is scaring me. Any advice or suggestions would be very welcome, my GP admits to being stumped.

[Penel]

Sorry to hear about your health problems. I must admit that I had to look up parasthesia. I found this article that seems informative.

healthline.com/health/pares...

If gluten is a problem for your body and you have only just stopped eating it, it is likely to take time for your body to be able to absorb nutrients properly. If you have Coeliac disease you need to be eating gluten in order for the antibodies to be detected in a blood test. One symptom of Coeliac disease and Non-Coeliac gluten sensitivity can be neurological problems.

I would have thought that your GP really needs to refer you to a specialist! NICE guidelines recommend a test for Coeliac disease for unexplained neurological problems or anemia.

[ABC852031 in reply to Penel]

Thanks for your reply, I have found a neurologist but he can't see me until next month. It could be worse, if I had to rely on the nhs I believe the wait is around four months. In the meanwhile I'm getting worse by the day which is scary, so I posted on this forum in case what i said struck a chord with anyone.

[Marz in reply to ABC852031]

How often are you having injections ? Should be every other day until symptoms improve ...

Thyroid ? - has it been correctly tested ?

[ABC852031 in reply to Marz]

Two injections a week, I had a thyroid panel done by medichecks and it was OK. GF seems to be helping (I've put on three pounds) and I've stopped taking b complex which I think may have caused burning skin sensation and added to the problem.

[Marz in reply to ABC852031]

According to the Guidelines B12 injections should be given on alternate days with neurological issues. To be done until no further improvement. Important to take Folate / Folic Acid as it works with B12 in a special way. Guidelines should be on the GP's desk !

[ABC852031 in reply to Marz]

Thank you for your advice. I think my b12 is under control. Like most, my doctor didn't know the right treatment but unlike most was willing to listen. I was on 3 injections a week but I consulted a specialist in Holland who changed me to 2 a week plus folic acid and vitamin d. I don't have PA. Three weeks gluten free has made a big difference. Good digestion and no more arthritis pain. Fingers crossed about the neuropathy, but I'm in a much better place than when I posted. People on this site are so kind and helpful.