NeuroTalk Support Groups - Udate on serum blood results and a question

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- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Udate on serum blood results and a question (https://www.neurotalk.org/peripheral-neuropathy/215968-udate-serum-blood-results-question.html)

Ditto what MrsD said.

With toxic neuropathy or autoimmune based neuropathy, the damage can be at either the dorsal root or at the small fibers them self. So even if the skin biopsy comes back negative, that does NOT mean you don't have neuropathy. But checking for this is a very good idea so you know whether those small fibers have been affected.

Have you had your B12 checked? If so, what was the result? Based upon the result you may need to consider supplementing in this area.

Quote:

Originally Posted by en bloc (Post 1123393)

My B12 was 370 last time it was checked. I did take sublingual B12 for 6 months but the neuropathic symptoms remained unchanged. Thanks for explaining about the skin biopsy. I'm a bit devastated having been misinformed by my GP about the immunoglobulin levels ten days ago. It really helps having proper information from people here. I don't think my GP or the neurologist will take it seriously as a neuropathy if my skin biopsy comes back normal. I don't really understand how my legs can feel as if they are wet and burning - water levels rising a bit more each day - if this doesn't show up in any tests at all though. Give me RA pain anyday over this waterlogged ice/ burn/ throb.

Quote:

Originally Posted by mrsD (Post 1123385)

If your doctor offers the skin biopsy, I'd have it done.

The damages to the nerves with toxins often occur at the dorsal root area, and when that becomes long term the end fibers eventually die back.

People with a genetic flaw that cannot repair minor damage to the dorsal root neurons, continue with the PN. Others with time tend to repair some or all of the damage by making certain growth enzymes. Research is just beginning on this factor, so there is little in the way of quick hope...but with time some stem cell treatment might be devised.

Thank-you. I was told by my GP and the neurologist that the current state of play is almost certainly permanent whatever the cause. But then both have said things they've now gone back on so better to learn this through you really because my trust in the medical profession is at an all time low today. I've never been one for running with false hopes although I'm fundamentally optimistic.

Something tells me that with the extent of your symptoms, your biopsy will show some damage of the fibers.

Your B12 is TOO LOW! It needs to be above 400 (higher for those with neuropathy symptoms). It doesn't sound like you are taking B12 now...and you should be. MrsD is the expert on B12 and how much should be taken based upon your results. I do know you need to take on an empty stomach for better absorption. Hopefully MrsD will give you the details on B12 supplementation.

Quote:

Originally Posted by en bloc (Post 1123442)

Thanks en bloc - I'll try anything now and will order more chewables as advised. It didnt make any difference last time but perhaps I need to chew more than one a day. I do know it's impossible to take too much. I also took a lot of folic acid for two years to address Methotrexate side effects as a folic antagonist - so I paid for private tests (can't recall what they were called Hemostecene and M something?) 18 months ago in case the folic had skewed the serum B12 results. I have these somewhere too so will look at Mrs D's B12 threads and go back to the B12 possibility again.