[Lakerk]

Hello,
I have been struggling with health problems 3 years now, with the main problems being neuropathy, joint pain and extreme fatigue. I recently had a skin biopsy which was negative for small fiber neuropathy. I am confused by this as I have pronuonced sensory loss, parathesia and mild foot drop. Nerve biopsy and emg/ncv are also normal. It is thought that I have vasculitis and some sort of inflammatory polyarthritis. I have been treated with imuran and prednisone for a year, but am still not in remission.

Shouldn't my biopsy have been positive if I have peripheral neuropathy? Can something else cause these symptoms? I am feeling very discouraged as there is little diagnostic proof of my diagnosis and I am not getting better after going through tons of testing.
Laker

[daniella]

Hey. Welcome. I see you are from MI and I lived there for well my life till 6 months ago. What part do you live in and who was your neuro?I understand your frustration with tests cause I had similar and still do. My first set of nc didn't show and then my 2nd with the ssep did. Also I wonder if you have had mri's? Have you looked at a dx of fibro too? Sorry I don't have more advice. Hopefully the others will be along soon

[dahlek]

The question you ask is really the root of neuropathy diagnositics!
Kind of like 'patents'...is it animal, vegetable, or mineral?
So many things overlap pure PN and other issues and vasculitis is definitely one of them.
That all said, I have to ask if you've taken a look at the Liza Jane worksheets and gone down the list of tests that you've had done? http://www.lizajane.org/
Also, I suspect that you are getting good care by your docs if they've gone so far as to do a biopsy....It was a punch biopsy yes? Not a full sural...I hope.
This below is a web site that can explain about the vascular and diabetic implacations and impact on the skin and nerves....please read it carefully - it just mite help you make the connections between causes and effects in your case: http://telemedicine.org/stamford.htm
Biopsies and nerve conduction studies don't always show 'signs' at first...I had excellent NCS's at first as I'd been fit before my own PN onset. Within a year I'd lost all reflex in my knees and ankles and the NCS's got worse progressively - to the point where during my last NCS I couldn't feel a thing! Many people hate these tests as they can hurt a lot - while one still has some feeling left. Me? I almost fell asleep on the table during the test!
I'm not up-to-date on inflammatory polyarthritis, but I'll try and look upstuff and see if there are connections... Have you had any spinal taps to see if you've other immune actions/reactions going on besides arthritis?
I hope this info will help you begin to sort out the neuropathy and other issues you have. This is a start? 's - j

[glenntaj]

--doesn't necessarily rule out small-fiber neuropathy processes; it may just be that the processes have not yet advanced far enough to be really noticable.

People expereinced in reading the pathology results are necessary, as both the intraepdiermal nerve fiber density AND the conditon of those nerves (e.g., swelling/branching) need to be looked at. Density can be within "normal" ranges--the McArthur protocols usually put this as between the 5th and 95th percentiles of normed density (a little wide, I think--for an individual, whether you are reduced out of this range may depend on where you start), but if the nerves show abnromal sprouting/branching, that may be a sign of neuropathy.

Then, too, if your syndrome is predominantly larger fiber, your small fibers on skin biopsy may "look normal".

What other testing have you had (I think you also mentioned a nerve biopsy--was that of the sural nerve)?

[mrsD]

A whole year on prednisone is a tough treatment.

Prednisone depletes many nutrients, and when those get low, a whole new
set of symptoms can result.

Many doctors are now testing people with chronic pain issues for serum Vit D.
I suggest you have this done ASAP.

These are the nutrients that prednisone negatively affects:

Calcium
Magnesium
Potassium
Selenium
Zinc
Folic acid
Vit C
Vit D

Low levels of selenium and zinc lead to poor thyroid hormone utilization.
These two minerals are involved in the conversion of T4 to T3 in the tissues.
I have a magnesium thread on our Vitamin forum here:
http://neurotalk.psychcentral.com/thread1138.html

When you get tested for Vit D levels, also request electrolytes (calcium, magnesium, potassium) and Vit B12. Any B12 reading below 500 should be
supplemented (American ranges are notoriously low for some reason).

The tradeoff with prednisone treatment is quite high. Many people develop osteoporosis as a result.
And if you take OTHER RX medications, you may be depleting EXTRA for certain things. For example ACE inhibitors for blood pressure, deplete zinc.

Once a person begins treatment for something, very often new things
develop as a result. Unfortunately doctors don't keep up with that information,
and the patient suffers.

If you were given Fosamax or Actonel or Boniva for osteoporosis prevention, this may be causing your PAIN.
There are studies to show that these drugs cause pain in some patients, and are not really good for
steroid induced osteoporosis.

[amit]

my neuro said that in many cases - the skin biopsy comes out negative (which means - normal) - just because the problem is with the ions channels that in the nerve and not the nerve itself.

[Lakerk]

Thank you very much for the information. I think you have provided me with more information than I have gotten from my doctors this entire time! I have not been feeling very well so I am going to check out the links tommorrow and just answer a few of the questions now.

I live in western Michigan, near Lake Michigan and have been treated at U of Mich for 1-1/2 years. I have been on prednisone that long or more and also take imuran, pamelor for nerve pain, synthroid, singulair, enablex, and procardia, prilosec, calcium +D. Not sure if the blood pressure problem is from the vasculitis or the prednisone.

I had a sural nerve biopsy early on which showed only slight axonal degeneration. Emg/NcV is in normal range but differs from left to right leg which I was told indicates an autoimmune cause. MRI of brain but not spine, spinal tap (normal) lots and lots of lab work for toxins, deficiencies etc. all normal. Had a positive P-Anca and high ESR early on before treatment but normal now. I have had a wide range of bizarre symptoms affecting hearing, speech, joints, muscles, memory, nerves etc. Things are much better now than before treatment but still not in remission as we had hoped. Also my walk is being affected and probably some autonomic function. Pain has become a huge problem.

Wow, that was long and I think I answered everything. Thanks again for the info. I will check it out soon.
Lakerk