Peripheral Nueropthy

[Tricia2747]

Hi all you b12 sufferers.. I have been getting b12 injections for nearly 2 years, my tingly feet started improving,but for the last 4 weeks it's gotten bad again and I now have have itchy palms in both hands.driving me nuts.went see GP,not my regular one,oh!! he said nothing to do with B12, it's your folic levals, Anyway he said to get blood tests done,folic,liver function diabeties,and FBC. Now I suffer with IBS so taking Folic tabs upset my system. Now my last folic level was 3.6. so yes a bit low. Anyway started to try folic again just a very low dose 400 mcg, and I'm tolerating it. Latest blood test all came back as normal,my folic level 4.2.so going up.my B12 --167, Anyone out there getting this neuropathy,,does it ever go ??? Is there anything else I can do to help it get better.??? Any help appreciated.

Tricia.

[fbirder]

Ask to see a neurologist.

I have a book on PN that lists 80 possible causes. Your GP will know three or four. It sounds like the folate is a guess.

[Tricia2747 in reply to fbirder]

Oh thanks what s the book called , picking up the report on my blood test friday,,have them all. My last was 3.6 so has increased.

I am going to ask to be referred tho,as PN can be dangerous.

Tricia.😁

[fbirder in reply to Tricia2747]

The book is called Peripheral Neuropathy. Not cheap, £18.50 for the paperback amazon.co.uk/gp/product/193...

Yes, some forms of PN are nasty. For a while I thought I might have Guillan-Barré syndrome. Thankfully, not.

[helvella in reply to fbirder]

About half that secondhand:

abebooks.co.uk/servlet/Sear...

[deniseinmilden]

I'm a bit short of time now but yes, if you get your supporting supplements - especially in this case your folate - balanced at the right levels to support your B12, your neuropathy should improve again.

A broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron, ideally from your diet but supplemented if required are a good starting point.

If you would like more information you could look through my past replies by double clicking on my name and looking under the heading "replies".

Sorry not to add more now!

[Raclette67]

Tricia,

This is exactly the same scenario to what is happening to me! I’ve gone downhill after 2,5 years si.

My palms got itchy around 2 months ago. And blotchy. It seems to be extra triggered by water? I also developed white finger tips. I’ve had a working definition of reynauds in feet for year. Doctors seem to think I don’t have peripheral neuropathy but no tests have been done.

You are not alone!

[fbirder in reply to Raclette67]

Tests should be done.

See a neurologist to get nerve conduction studies. That will give them some evidence as to the possible causes.

[Portia1974]

I am awaiting a skin punch biopsy to test for SFN (small fibre neuropathy) at Barts in London. This was ordered by my neurologist. So, echo fbirders advice to seek a referall to a neurologist...and suggest looking into SFN to see if it resonates. I should stress that it seems that while SFN is one explanation for neuropathy, it is not a "ground zero" diagnosis as you would then look for what was causing the SFN. Of which there are many causes. So a step in the process of finding root cause, rather than a destination...from what I can gather.

[Portia1974 in reply to Portia1974]

This is a very informative site:

neuropathycommons.org/neuro...

[fbirder in reply to Portia1974]

That looks a great site. Thanks

[Tricia2747 in reply to Portia1974]

Thanks ,I'm seeing G P on friday,wouldn't be worried, but my palms have started itching,and my my feet have never been so bad.feels like I'm standing on stinging nettles.will see if Dr will refer me to a neurologist.

Tricia .2710

[RobinWat]

Hi - I have severe motor and sensory neuropathy initially triggered we think by undiagnosed pernicious anaemia. However in past few years it has become far worse and neurology physicians, despite a multitude of tests, are unable to say what is causing the 'problem'. My next appointment is in June and I will to see what happens then.

[Mannequin18]

Good luck.

[sissykinney]

Been taking Gabapentin for burning/tingling feet. Am getting the B shots but am suffering bad nocturnal feet & leg cramps. Sometimes the cramps so bad hurts 24 hrs and also get foot cramps during day. Looked this up & no cure and not even a treatment consensus. 😥 that I have to deal with this.

[Martin_12]

I think alpha lipoec acid and Acetyl-L-carnitine relieve the symptoms a little. I take 400 mg alpha lipoec acid and 1/4 teaspoon acetyl L carnitine powder twice a day. In clinical trials they have been shown to help in diabetic neuropathy but not in neuropathy caused by cancer chemotherapy. Haven't seen any trials in neuropathy caused by B12 deficiency.