Achy legs

[KiPeRi75]

I have pa, a few years ago I kept waking up with numb/ achy feet. Over time this has gone up to my knees and now my whole leg (both). They really feel quite uncomfortable. This happens nearly every time I wake up - sometimes 3 times a night. I also have problems with tinnitus and difficulty remembering words Tec.

Elsewhere I have read that this sounds like peripheral neuropathy and that I should have b12 loading doses every other day until symptoms improve. I have b12 jabs every 8wks at present. I have Drs appointment this afternoon.

Any thoughts please

[Hidden]

Hi,

Welcome here! It reads like you are not getting enough B12, it may mean you have now also become folate def and if no folate then B12 is not properly metabolised and visa versa, so make sure serum folate and ferritin are tested when you see your GP. It is not uncommon to also get other deficiencies once treatment has started, and possibly other conditions, so further investigations as to why you are developing neurological problems is best. Think you should see a neurologist most probably.

It is also worth knowing other vitamin def can cause same sort of problems, see:

neuromuscular.wustl.edu/not...

Anyway it sounds like you are not doing well on current treatment and this needs to be addressed as you do not want more damage than you already have,

Hope all goes well, if no help from GP you could try to learn to self inject to get your self right, but best to for now get investigations done as other conditions can cause the same problems (thyroid, other vitamin def etc). Some people have found B12 infusions ( methylcobalamin) helpful for peripheral neuropathy.

Kind regards,

Marre.

[KiPeRi75 in reply to Hidden]

Hi Marre

Thanks for your reply.

Dr was rubbish - said couldn't understand how some people felt ill before b12 and better afterwards! Said as I'd had b12 for so many years every 8 weeks I certainly didn't need extra! I'm afraid I chickened out from telling him about BNF guidelines. Shrugged when I told him my numb legs were getting worse.

I've had ferritin/folate/magnesium/potassium/vit d and loads more taken in June, got copy of results and all look well within range. I have hypothyroidism, but lab refused to do the FT3 that Dr ordered! I take levothyroxine. I'm also type 2 diabetic (diet controlled) - nurse confirmed legs numbness not diabetes related.

Am thinking of trying to see a private Dr, but not sure whether I can afford it. But am worried about my legs. I've always trusted this Dr, so am really disappointed that he was so useless.

[KiPeRi75 in reply to KiPeRi75]

Not heard of b12 infusions - how does that work/where do you get it from please?

[Hidden in reply to KiPeRi75]

A Dr R gives B12 (methylcobalamin) infusions, this was about £150,- , then you learn to self inject methylcobalamin subcutain (with insulin needles) , this seems very effective for those with particularly peripheral neuropathy. Martyn; the founder of PAS has them and initially he could not believe how he could feel his legs again. To find out where, what, who and how, contact the B12 society, ring:

Head office: 01656 769 717.

[Jane123]

How did you get on at the Drs? I have the problems with very painful legs and numbness, Dr thinks it could be some form of neuropathy.

[KiPeRi75]

Hi Jane - I'm afraid I've had no joy, seen 3 GP's and a private Dr. All have ignored my leg problems/tinnitus/brain fog. I feel I have no option but to self inject. I am trying stopping my statins for 2 months to see if my brain fog improves, so I shall have to wait til then before I inject so I don't confuse any results.

Good news about your Dr though - let's hope you get the treatment you need without having to fight. Do you have PA or b12d? If not are you being tested?