[microbar]

have rheumatoid arthritus for about 5 year now
Just developed Peripheral neuropathy in my feet over the last year
My Rheumatologist has asked me to have a nerve biopsy
as he thinks the arthritus is causing the neuropathy,
But have seen the neuro specialist today and he said Its not worth having the nerve biopsy as we have already established I have PN.
Is the neuro specialist trying to fob me off with excuses
Has anyone had this nerve biopsy done and if so did it help in a diagnosis.
And does it help with a pointer to treating the PN
Is there any treatment for PN I have lots of questions IN regards to Pn,
And feel alone and worried about this condition and I am worried it will spread around my body,
Thankyou for any help you can give me.

[mrsD]

Some of the treatments for RA cause nutrient depletions.

Some use biological drugs like Enbrel or Humira.

Some use immune modulating drugs like methotrexate.

PN can be autoimmune like RA. It can also be caused by
exposure to some drugs and nutrient deficiencies.

Determination by blood tests can tell alot. But biopsies
tell how much is actually left or lost. So they have their own
merit.

[Megan]

Would a skin biopsy (epidermal) be better, as from what I have read these seem to cause less longterm problems than nerve biopsies?

I don't know if the skin biopsies have become the biopsy of choice now for all instances of PN, but they seem to be less invasive, less painful, produce less scarring and can be repeated in the same spot subsequently to detect deterioration of nerve densitity.

[Raglet]

hi there

I have lupus, which as you probably know is in the same group of diseases as RA, plus I have PN. Have you had nerve conduction studies done ? They are electrical tests, which in my case has shown what type of neuropathy I have (sensori-motor axonal neuropathy) and I have them done every couple of years to monitor how my neuropathy is progressing.

If you have not yet had these tests done, then personally I would talk to your neuro about having them done first. I have not had the nerve biopsy - it wouldn't in anyway affect the treatment of my neuropathy, and the nerve conduction studies plus my symptoms chart the progression of my PN so in my case there just isn't really any point.

If the arthritis is causing the neuropathy, then treatment of the neuropathy will essentially be the same as the treatment of your RA, plus of course any additional medications you may need for pain caused by the PN. The mainstay of the treatment of my PN is my lupus treatment (steriods etc) as by supressing my lupus it is hoped to help my PN. Which in my case has not been successful, but one can only hope.

hth

raglet

[glenntaj]

--to have a nerve biopsy, as opposed to a skin biopsy, is if neuropathy secondary to a vasculitic/connective autoimmune disorder is suspected:

http://neuromuscular.wustl.edu/nother/bx.html

There tend to be particular infiltrates to nerve and muscle (both are usually biopsied together) and particular patterns of degeneration that might clinch a diagnosis of vasculitic neuropathy.

[microbar]

Originally Posted by Raglet

hi there

I have lupus, which as you probably know is in the same group of diseases as RA, plus I have PN. Have you had nerve conduction studies done ? They are electrical tests, which in my case has shown what type of neuropathy I have (sensori-motor axonal neuropathy) and I have them done every couple of years to monitor how my neuropathy is progressing.

If you have not yet had these tests done, then personally I would talk to your neuro about having them done first. I have not had the nerve biopsy - it wouldn't in anyway affect the treatment of my neuropathy, and the nerve conduction studies plus my symptoms chart the progression of my PN so in my case there just isn't really any point.

If the arthritis is causing the neuropathy, then treatment of the neuropathy will essentially be the same as the treatment of your RA, plus of course any additional medications you may need for pain caused by the PN. The mainstay of the treatment of my PN is my lupus treatment (steriods etc) as by supressing my lupus it is hoped to help my PN. Which in my case has not been successful, but one can only hope.

hth

raglet

Yes I have had nerve conduction studies IE electrodes on my feet
The specialist wrote back to my rheumatoligist confirming that the tests showed I had nerve damage, My rheumatoligist then suggested the nerve biopsy but said I might have to stay in hospital up to 2 weeks.
But I was under the impression the biopsy was an outpatient procedure.
My rheumatoligist did not expand on why I needed to stay in hospital for 2 weeks. Then I few days ago I had an appoitment with the nero specialist
who did more tests on me with a pin and said he would take some blood tests
and then send for me again, He also said it would be of no benefit to have the biopsy as my nerve damage was already evident.
I feel as though I am being brushed off with excuses now And I am expected
just to live with the PN,Things were bad enough with the arthritus but The PN is getting very panefull now And I dont know what to do next
thankyou all for your input I feel in such a hop;ess situation at the moment.

[dahlek]

the neuro is going to start with the standard tests....the bloodwork, likely more nerve conduction tests [if they did ONLY your feet something is inadequate in that] and a FULL MRI from head to pelvis to see if there is any spinal compression or the like. More bloodwork might be necessary after that, depending on the results of earlier tests... and then even more specialized tests as needed, depending on what those 'results' show. Having gone the 'full route' so to speak myself? It CAN be extensive and then some!
I've been there, done that! It seems to take forever once you get a neuro actually WORKING for you? It can take 2-4 months to get all the tests scheduled [maybe approved by your insurance to boot?] and THEN you have to WAIT for results another month or so.... It is agonizing to be in the limbo of not even being tested or waiting for the test results!
I actually REFUSED to have a sural nerve biopsy. Why? Because many insurances no longer cover it, and while skin biopsies aren't approved YET, they will be a standard procedure very soon. Also, all they show is that there is NERVE DEATH or life, and the extent of that. Conduction studies and other factors are much more important.....except-for those people who have a whole slew of 'inconclusives', yet are having progressive nerve deterioration as shown by conduction studies and other means. Also, lots of docs [younger ones in particular]want to get this 'procedure' on their resumes...No thank you. It IS an invasive procedure that can cause long-term additional pain and possibly infections. I declined because that doc was too eager [never saw again] and I'd more or less met the 9 out of 10 rule in terms of testing positive for my neuro issues and subsequent treatments..... It's your choice tho. You have to KNOW more about what these guys want to DO to/with YOU! Don't know about you, but I'm not a TOY to play with?
I'd do the sural biopsy ONLY, ONLY! as a very last resort. Not yet tho.
IF you aren't communicating well w/your rheumy? [And, it sounds like it's not happening]
Ask for and GET copies of your file [some things will be omitted...like doc's notes?] but all the test results and stuff you should be able to get. Just say 'HIPAA'! Health Insurance Portability & Accountability Act or something like that. They may charge you, but once you've the actual tests, you can start burning the web and learning far more than you ever wanted to know about what all is going on!
If you live in a metro type area, you should have a choice of specialists to either get second opinions from or referrals to... IF you like the neuro, simply ASK him! Not for just one name, tho...but for a couple. YOU must find a set of docs YOU feel comfortable with and to whom you can communicate well with [and ideally? Each other!]. Yeah, easier said than done, but...... YOU have to garner the strength to do it to preserve any quality of life.
And yes, RA and PN can be connected? But they can also be [sigh] independent of each other. Learn what all you can in the meantime, and it does 'overload' the brain at first? And that all will help YOU ask your docs the more concise questions to get better answers! For you some knowledge isn't empowering, you need a LOT of knowledge and then go for it!
Don't you just LOOOVE those 'pin' tests?????They mean so little to us, but so much to the docs! I've never gotten a handle on that one, not that it makes lots of difference.
Keep faith and go for it! Fight hard, and.....remember to be CONSISTENT, adding only as new things crop up.... But, consistency in what your problems ARE are key to getting docs to work with you. 's - j

[cyclelops]

LOL Dahlek---I am always wondering if that pin is clean!!

I would bet the farm, that if they did skin biopsies on people with autoimmune diseases, the whole gamut, from RA, Sjogrens, Lupus, Post Lyme, Sarcoidosis, Psoriasis and even the seronegative spondyloarthropathies, they would find some degree of PN. How many people with Fibro have had the skin biopsies?

Docs seem content to find one thing and say, 'There ya go, we got something", even if it isn't perfect.

I also have an issue with suppressing the immune system in diseases that have a known propensity to develop into Lymphoma. How can you win? I hope I can stick with my IVIG.

It seems the more I read on autoimmune disease, the more blurred the boundaries get, unless, you have a clear serological marker....and even then, those change!! Like I said before....Phooey on all this illness. I wish it would all go away.