Been away for a while, new questions
 

I finally got my biopsy reports from almost a year ago. So here are my new questions. I was recently diagnosed with small fiber neuropathy, possibly autoimmune mediated. This is from a complete physical exam by a neurologist as well as blood work (slightly elevated ANA and large family history of autoimmune) and diagnostic tests. I have no health insurance, and cannot afford the IVIG therapy he recommended, so have not been back to him to understand my results. I would appreciate if you could shed some light on these results and what I've been told?
Punch Biopsy was done on Distal leg, Distal thigh and Proximal thigh. Nevre density is reduced at distal leg and thigh, 2.8 fibers/mm at leg, 3.3 fibers/mm thigh. Proximal thigh normal. Impression: This biopsy shows a moderately severe, lenght-dependant, small fiber neuropathy. The distal sudomoter fibers also appear affected. Is "moderately severe" bad? Since I'm not getting IVIG or any other treatment, can I expect it to get worse? What is the difference between length dependant and distal sudomotor fibers?
QSART was done on left forearm, left proximal leg, left distal leg, left proximal foot. Result impression: responses at the left forearm and foot are reduced. These findings are nonspecific for etiology but are consistent with a postganglionic sympathetic sudomotor abnormality like that seen in autonomic/small fiber neuropathy.
Normal cardiovascular autonomic test panel, so I know it's not P.O.T.S. I was also told the EMG showed nothing. I do have a positive Romberg's test, and decreased reflexes in my ankles. I also have moderate osteoarthritis L4/L5 & L5/S1, would that cause the reduction of nerves as shown on the biopsy?

The lumbar osteoarthritis--
 

--is VERY unlikely to have anything to do with the reduction in small nerve fiber density that the skin biopsy showed (though obviously, nerve impingment in the spine and adjacent nerve roots can cause neurological symptoms of their own). The decreased ankle reflexes may be related to the lumbar situation, though.

Given the skin biopsy and QSART results, you definitely seem to have something attacking the small, unmyelianted nerve fibers that subsume the sensations of pain and temperature and underlie many autonomic functions. It's not unusual for people to get both sensory symptoms and autonomic ones from small-fiber syndromes, though for many the autonomic ones remain minor and subclinical (they often manifest in sweating or blood pressure difficulties).

It's also not unusual for people with small-fiber syndromes to have normal nerve conduction/EMG results--these test only measure gross action of larger, myelinated nerves.

The length dependency implies "die-back"--in many neuropathies, the fibers farthest from body center mafunction first and more severely, as they are more difficult to get oxygen and nutrients to, and waste proudcts out from, especially if there is some sort of small-vessel circulatory problem, which is common in diabetes (the most common cause of small-fiber syndromes) and autoimmune ANA vascular/collagen/connective tissue disorders (an underappreciate cause of small-fiber syndromes).

You should see:

http://neuromuscular.wustl.edu/sensory-pain.html

http://neuromuscular.wustl.edu/sensory-small.html

http://neuromuscular.wustl.edu/nother/diabetes.htm

http://neuromuscular.wustl.edu/antib...tml#vasculitis

As to the progression/prognosis, very hard to say--some people have slowly progressive course, some plateau, some even reverse, but al lot of this may depend on whether the cause is actually findable. I understand why the IVIg was recommended, as this has a decent record of slowing/arresting autoimmune attacks, but it is very expensive. I defintiely would look into supplementation threads here to try to maximize your nerve healling environment.

[QUOTE=glenntaj;587391]--is VERY unlikely to have anything to do with the r

I understand why the IVIg was recommended, as this has a decent record of slowing/arresting autoimmune attacks, but it is very expensive.


*** Your answer was very helpful and informative. What is an IVIg test? My new neurologist is scheduling another nerve conduction test which I've understood only measures large nerves. My neuropathy seems to be progressing up my legs and I am finding myself not as stable in my mobility, so I suspect the nerve conduction can shed light on the rate of progression and when/if physical mobility will be compromised. But none of that seems oriented towards the pain which I understand is coming from my small nerve cells.

Cowboy

Hi Cowboy. IVIG is not a test, it is a treatment. My understanding is it's plasma from 3,000-5,000 donors. It is used in autoimmune disorders. The 'goal' is to replace the autoimmune plasma with healthy plasma in an attempt to stop the body from attacking itself.

glenntaj - thank you for your information. Am I correct in assuming then that the autonomic involvement would also contribute to sluggish digestion and random heart palpitations? Saw a cardiologist about that - he found no cause and doesn't know anything about neuropathy so he was no help understanding that.
I'm slowly starting to understand more and more about what I'm dealing with. Last winter, I was posting a bit about the itching, which I'm beginning to understand is because of the neuropathy, since I have reduced sweating capabilities in my lower legs and forearms, when the weather gets cold and the humidity drops, my skin gets excessively dry which is what causes the itching. My fingertips also split and crack. This type of weather is also when the neuropathy is more noticeable/painful.
One last question, and I aplogize for repeating myself, should I be concerned about the diagnosis of 'moderately severe'? Does that really say anything about my condition?

Welcome back dmouse!

You as I was reading your post, I had some ideas.

Don't attribute everything to PN.... when the skin on the fingers or elsewhere degrades, this can usually be fixed with supplements.

EFAs Flax oil, evening primrose (you can rub this right onto the skin, and fish oil help restore the skin since much of it is composed of fatty acids. Flax oil and fish oil you swallow. Start at one each.

Antioxidants Vits ACE and selenium and zinc are made for skin conditions. There are some in mixtures like this one:
http://www.vitacost.com/Carlson-Aces-Zn

Also folic acid and CoQ-10 help alot.

Do you smoke? Do you use cleaners, or solvents alot?
What kind of soap do you use? Some SoftSoap pumps can be very irritating of the skin and actually defat it. I only use Dove unscented in this house...it is great for problem skin. Wear rubber gloves when using cleaning agents...they can be very hard on the skin.

I used to see split fingers in printers (solvents), and masons who mix concrete all the time (the cement eats the skin off).
One fast way to rehydrate the skin is to us Eucerin ointment and cover with cotton gloves at night.
They look like this:
http://www.drugsdepot.com/viewitem.p..._COTTON_GLOVES
Most drugstores have them. This will help in the short run, but really you build your skin from the inside out, so the proper nutrients in your diet will lead to stronger softer skin eventually.

Hello again, Mrs. D!
I use only Dove unscented as well and this time of year I use heavy lotions. Lubriderm works better for me. Gloves on hands and feet at night as well. Do need to wear gloves for cleaning more often, usually in too big a hurry to just get the hob done! Most times I just use neosporin and band-aids on the splits and they go away. Have discovered, that being on the computer more then just a few minutes a day will cause them too.

I'll have to pick up more supplements. Slacked off over the summer because I felt pretty good. Now I'm paying for it so, dummy me. Won't let that happen again!

Any cleaner that cleans "grease" ...like Fantastic, or that strong DAWN concentrate, etc, will defat the oils in your skin/fingers. They are very very caustic.

Some pets even get split paw pads and lip inflammation if
their bowls are not rinsed extremely well, or any residue remains on a counter top or floor. Dogs esp seem to get split pads. So it is not just us. (humans! ;) )

Very true. I usually use cleaners in a spray bottle and a sponge to avoid immersing my hands in chemicals, not sure if that helps or not. Working with fabric, as in folding laundry, will also dry my hands out... so it's not just chemicals or soaps. Will be picking up those yellow cleaning gloves though. Can't hurt!

I found the info on the dry skin/split skin and itching in a medical publication about the QSART test. It clicked for me and at least I'll stop looking into allergies and making myself nuts over it!

Mrs. D has a point about caustic cleaning products--
 

--and caustic personal cleaning products.

I have to be very careful what soaps I use--I've always had dry skin, especially in winter, when one is going from cold dry air into warm dry air quite often. I do humidfy the lving quarters, but I've also found that using harsh soaps, like Ivory, can really dry me out (so I don't anymore). And, I find using the fish oils definitely helps.

As to the other stuff--yes, sweating difficulties/abnormalities, heart misfirings, and sluggish digestion certainly fall into the category of possible autonomic effects of small-fiber neuropathies, though there are lots of possible causes of all of these that are not necessarily neuropathy related. Those systems tend to be a little more sluggish with age--especially the digestive tract, if it's getting too many simple carbs and not enough fiber/protein. The question would be how quickly have these effects come on, are they concommitant with your other neuropathy symptoms, and are they rapidly progressing, or only very slowly, and how disruptive are they becoming. Mild sweating difficulties or occassional missed heartbeats, or speedy heatbeats, are not generally dangerous, but if they occur constantly, or are severe, more attention needs to be paid, Similarly, sluggish digestive/eliminative tracts are extremely common, and often are related to medications, and are often easily controllable with supplements, warm beverages, or exercise, but if they progess to extreme dimensions (kmeb can speak all about that), that's a much more serious situation.