[MAT52]

Unfortunately my general practitioner seems to have got it wrong when he said high levels of Immunoglobulin from the spinal tap - so was a bit acerbic with me this time and gave me a copy of the neuro's letter to take away. It seems the trauma of the tap meant that half the CSF was contaminated with blood but "accounting for this the constituents were normal." Goes on to say "She had paired oligoclonal balance which are not specific and are unlikely to represent CNS disease. As you know her rheumatoid factor is within normal limits and her ENA profile is negative."

Heck this has depressed me - I was so relieved when GP said that something had shown up from the LP and now it seems it was just contaminated by my blood!

All the other serum tests (Glucose, serum ACE, immunoglobulins, VDRL, Lyme serology and cryoproteins) were either normal or negative - nerve conduction normal too as I already knew - including galvanic skin response. I think this was the one he had to keep blowing on to keep it cool enough to operate

MRI showed "only minor small vessel disease" which makes me feel like a dying plant MRI of cervical spine showed "degenerative changes but no evidence of cord decompression .. possible left C6 root change, however this doesn't correspond with her symptoms".

Conclusion seems to be that "despite clinical evidence of a mild small fiber neuropathy there is no supportive evidence on investigations". He says the next stage will be for me to have a skin biopsy "which she is keen to have so all possible investigations are performed". He will therefore be writing to the consultant neuro-pathologist for advice and make arrangements for this once he's heard back.

He refers to Erythromelagia but says there's no evidence of a secondary cause for this. Suggests I try low dose Aspirin (done and dusted!) concludes "I have not found convincing evidence on which to base any increase in her immune suppressive treatment".

Oh well perhaps with my gastric problems and drug intolerences (GP feels dyspesia worsened by Asprin) it's all as well that I'm not about to try any major new approaches anytime soon.

GP suggested that some of my drug intolerences may have been caused by too much introspection! How one consultant's letter plus negative/ normal results can change his attitude towards me in the space of a week - it's amazing! After the most appalling night of stomach and nerve pain I combusted and told him that I haven't got time to be introspective just now - am off north next week to be part of a major inspection of strategic health and care services. I asked him about autonomic neuropathy but he said he didn't think this was likely to be causing my stomach problems

He agreed to let me try stopping Duloxetine to see if my present symptoms improved and the nerve pain remained unchanged. He told me to stay on Omaprazole 2 a day for the time being until the tummy settles back down. End of.

Thanks once more for all of your support.

PS What's the "paired oligloclonal balance" can anyone explain?

PPS And if there's nothing rheumatic going on then why does my ESR fluctuate so much according to how stiff and achy I'm feeling - i.e between 17 and 70? Not that they bother to take full blood counts from me anymore anyway now I'm off immune suppressant meds.

[glenntaj]

--with the "paired oligoclonal bands" business is that they compared the results from your cerebrospinal fluid with those from your serum and they looked similar; this is generally thought to be less indicative of central nervous system disease then if there are different banding patterns between serum and fluid, or if there are no bands in serum but there is presence in fluid. In this latter case, an absence of banding in the serum indicates that there is immunoglobulin processing going on in the cerebrospinal fluid itself, which is more likely to be present in central nervous system disease (and in some other conditions, such as Lyme disease and Guillain Barre syndrome).

See:

http://www.clinlabnavigator.com/olig...ds-in-csf.html

[MAT52]

Originally Posted by glenntaj

--with the "paired oligoclonal bands" business is that they compared the results from your cerebrospinal fluid with those from your serum and they looked similar; this is generally thought to be less indicative of central nervous system disease then if there are different banding patterns between serum and fluid, or if there are no bands in serum but there is presence in fluid. In this latter case, an absence of banding in the serum indicates that there is immunoglobulin processing going on in the cerebrospinal fluid itself, which is more likely to be present in central nervous system disease (and in some other conditions, such as Lyme disease and Guillain Barre syndrome).

See:

http://www.clinlabnavigator.com/olig...ds-in-csf.html

Thank-you for explaining this - I understand now.

[mrsD]

Since your testing is not revealing much ....I'd consider that your past RA treatments may have caused your neuropathy.
Plaquenil and other DMARDs like methotrexate, can damage the DNA of cells. Plaquenil is related to the fluoroquinolone antibiotics and as a quinolone has potential to cause nerve damage.

http://www.ncbi.nlm.nih.gov/pubmed/11128688

[MAT52]

Originally Posted by mrsD

Since your testing is not revealing much ....I'd consider that your past RA treatments may have caused your neuropathy.
Plaquenil and other DMARDs like methotrexate, can damage the DNA of cells. Plaquenil is related to the fluoroquinolone antibiotics and as a quinolone has potential to cause nerve damage.

http://www.ncbi.nlm.nih.gov/pubmed/11128688

This is an interesting point thanks Mrs D. The neurophysiologist doctor made the same point. Only thing which possibly conflicts is that the strange surges of heat in my wrists and burnjng soles started before my RA began. However these might just have been hormonal signs as my menopause was just underway then. The pins and needles started when I had been on Methotrexate for 6 months and hydroxichloraquine for 3 months. But wouldn't these be improving now I've been off them for 8 months at least rather than worsening/ becoming more intense and widespread? Mat

[mrsD]

Had you used any fluoroquinolone antibiotic in the PAST?
Cipro, Levaquin or Avelox? Or Flagyl or Tindamax?

The most common other PN causing drug are statins for cholesterol.

Sometimes exposures to several things/toxins in a row and concurrently can damage nerves until a threshold is reached when symptoms appear.

If you indeed have DNA damage, then the supplements for mitochondrial support may be of use to you. Acetyl carnitine, CoQ-10, R-lipoic acid for starters. I'd also suggest fish oil or krill oil for their anti-inflammatory actions.

I'd avoid alcohol in any form as it is vasodilatory as well.

[en bloc]

I agree with MrsD about the past antibiotics or recent treatments possibly setting this into motion.

I would certainly go forward with the skin biopsy now that other tests are normal and they are actually recommending it (which you indicated could be tough to get done in the NHS). The nerve conduction studies CANNOT determine small fiber neuropathy, so no surprise they are normal. The skin biopsy, will confirm or rule out the SFN, as not only can it determine the density of fibers, but also look at condition of fibers for any abnormalities. It won't tell the you cause of the neuropathy, but it will confirm it's presence and give you a baseline for level of severity.

[MAT52]

Originally Posted by mrsD

Had you used any fluoroquinolone antibiotic in the PAST?
Cipro, Levaquin or Avelox? Or Flagyl or Tindamax?

The most common other PN causing drug are statins for cholesterol.

Sometimes exposures to several things/toxins in a row and concurrently can damage nerves until a threshold is reached when symptoms appear.

If you indeed have DNA damage, then the supplements for mitochondrial support may be of use to you. Acetyl carnitine, CoQ-10, R-lipoic acid for starters. I'd also suggest fish oil or krill oil for their anti-inflammatory actions.

I'd avoid alcohol in any form as it is vasodilatory as well.

Mrs D you are very helpful indeed thanks. I do avoid alcohol now, am not on statins and have not taken any of the antibiotics you list. However I did sometimes drink more alcohol than I should have while taking MTX because it flagged up in my FBC - which was taken as part of my monthly toxicity blood monitoring.

It wasn't excessive amounts of alcholol by any means but my liver enzymes often became elevated as a result - which worried my GP. I know this sounds crazy but I was so desperate to come off methotrexate because of the awful taste and nausea that I wanted to be taken off it rather than reject it myself. So retrospectively I subconsciously became a tad reckless with my alcohol consumption I guess? Far from alcoholism but given I was on cytotoxic disease modifiers and have a delicate metabolism I wonder if this might have been enough to bring on an SFN?

I wonder if this is the real reason my rheumatologist didn't want to investigate my SFN and has chosen to keep me off anti rheumatic drugs perhaps?

Can you tell me whether a drug induced neuropathy would show up in a skin biopsy of small fibers or not? If not I wonder if I should bother because I'm now minded to just put my head down and bear the nerve pain as best I can - taking natural supplements such as fish oil as you suggest.

This way, if or when my RA comes back at least I won't be masking my SFN with other drugs and will know if my nerves have repaired? The pain is currently pretty awful but I'm getting used to it and practice deep breathing and it is preferable to additional drug reactions I feel.

I'm very grateful for your help on all this.

[MAT52]

Originally Posted by en bloc

I agree with MrsD about the past antibiotics or recent treatments possibly setting this into motion.

I would certainly go forward with the skin biopsy now that other tests are normal and they are actually recommending it (which you indicated could be tough to get done in the NHS). The nerve conduction studies CANNOT determine small fiber neuropathy, so no surprise they are normal. The skin biopsy, will confirm or rule out the SFN, as not only can it determine the density of fibers, but also look at condition of fibers for any abnormalities. It won't tell the you cause of the neuropathy, but it will confirm it's presence and give you a baseline for level of severity.

Thanks en bloc. In that case I will go ahead with the skin biopsy if the neuro pathologist agrees. I do know that the severity of nerve pain does not necessarily equate to the severity of nerve fiber damage from people on this site now. So I am more resigned to the idea that it's probably something I will have to learn to live with but will hopefuly not progress as originally thought. It also confirms my decision today to remain off drugs that aren't strictly necessary - such as Levothyroxine. Mat

[mrsD]

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.