Contact with farm animals? Could you have gotten contaminated by chemicals in a barn?

A lot of docs blow off Igenex Labs, but they are CLIA certified, and they do the bands for Lyme and Erlichosis. You could try that. My IgM response to Lyme was high and they only do the IgG on standard tests. I had PCR of my CSF and it was negative, so I am reasonably sure my Lyme was killed...but it may have induced the autoimmune stuff, I don't know.

Also, they can do a biopsy of muscle to see if anything shows there....I surprisingly showed a neurogenic myopathy.

I imagine they will do a skin biopsy and also stain it with the Congo Red for amyloidosis.

What is odd is your issues proceeded in a cephalic to caudal manner. Really odd. Guillain Bare goes from lower to upper. Most PN is distal to proximal. You are a mystery!!

I just think it is likely some organism, just as the others do. I would exhaust that first, the other things will eventually become clinically evident.

are you a small animal/office kind of vet only? or visit the farm? were your could have been exposed thru the air?
any exposure to xray?

Hey. Welcome and I am sorry you are facing this. Have you been tested for lupus,sjogrens,fibromyalgia? Just throwing some other conditions out because of the tired muscles,fatigue and dry eyes. I also have dry eyes but it is seperate I guess from the PN and RSD. I had skin issues too where my skin was like shedding off but that was seperate too. My point is some things can be connected of course and signs of a condition but some are seperate. It is hard to know. What medical docs have you been to? Hang in there

...Continuing saga...
 

Quick update - In January had EMG & NCS ("mild bilateral S1 radiculopathies are present" and "no electrodiagnostic evidence for PN"), I was quickly scheduled for lumbar MRI which I canceled due to travel, cost, and I guess wanting to take things 1 step... Had skin biopsies after I got back which just came back last week confirming Small Fiber.
Note: I have never had ANY pain - just skin numbness and muscle weakness. And eye dryness, and "heavy" or tightness around eyes/eyelids.

Whole body partial numbness has persisted.

I've had some additional fatigue episodes - when they hit I'm weak for at least a day. Head/face, hands more recently have a "callous-type feeling" of dull, tightness - that is, face feels tight but no outward change or redness. And have had continuing leg weakness but that also waxes and wanes. A few days ago legs were weaker and I feared leg collapse if I did much more - but now back to mild weakness.

Also had incident in January of a big travel day and tried to keep it light, but did carry a 35# box about 10 minutes (a simple task by past standards), half way through I paused, and arm was trembling, then after wards I was quite fatigued for about 18 hours.

And a month ago noticed my heart beating stronger when at rest, that I could even "feel" the beat in my neck & head where only that would happen after exercise.

I have appointment tomorrow with Neuro. Any additional questions I should ask them??

Well it is quite a puzzle.

I don't see in your past post that you had a Vit D level run?

I'd get that.

And perhaps investigate the other labs(Igenex) who do Lyme testing.

I hope you find your answer.

I agree with MRSD on the Igenex thing. I had a well documented case of Lyme, and rising titer from the state lab, and now nothing...except on Igenex.

The other thing I see, is tight face. Is your skin actually tightening? Any telangiectasis? Did they do an ANA and ENA? I have that face sensation too. My ANA is very high....but, I had the PN for 2 years prior to my ANA going ballistic. Get tested for all the autoimmune things, and given the eyelid thing, myasthenia gravis. I know it is a long shot, you being male (?), but, stranger things have happened. Many men get autoimmune disease.

Old barns are hideous for chemical residue. I wonder if you could have gotten near any bad chemicals? Eye dryness can be more than inflammation, it can result from neurotoxicity. Sjogren's occurs less often in men, but still does. I think more likely, it is neurologically caused. Could you get an autonomic battery done somewhere?

I am soooo glad you had the skin biopsy. I felt a lot like you. I was shocked when they told me I had PN....utterly shocked. I never had any wierd stuff....just dead feeling, and limbs falling asleep.

Another option if they don't find the cause is the hereditary neuropathy testing by Athena...(careful, check with insurance).

This is the beginning of a long journey, but start with the Igenex lab. You may be surprised at what you find. I am + for Borrelia and also Erlichosis. I had it 16 years ago. I also have that 'weakness' you speak of. I have to be sure of every foot plant on my right side....I never trust that leg. And to think I used to be a runner! (This sux).

Good luck to you, let us know what happens.

Thanks for the replies!

No Vit D testing yet. ANA was neg. B12 was 795 but I'm still taking 1000mcg daily.

My Neuro's message about tomorrow's appointment wrt Small Fiber Dx was "we can talk about treatment options". But wait - I didn't think SF was an end diagnosis! Just a condition of some undertermined process... I don't believe in "idiopathic", just that the connection hasn't been made yet.

Was reading about IgeneX - interesting. Costs?

Today was a good day - still leg weakness, but general energy and drive to get a lot done was intact. I'm wiped out now, but rest usually is beneficial.

I'll recap after tomorrow's appointment...

Sorry to rain on your parade, but neuropathy (PN, SF, etc) is a chronic illness with no known cure.....yet.
Sometimes the progression can be halted, sometimes even reversed a bit.
But probability is that you will have it, until a cure is found..... or your diagnoses determines a cause that can be corrected (usually decompression of nerves, by surgery - ''Dellon'' treatment).

Craig,
Over the past 5 years this crap has presented itself in many different ways, it started in the left foot and then into the right foot after 6 months, the left foot is now very mild really doesn't bother me all that much, but I now have a neuroma in my right foot and right leg has become very weak. I have quit all meds except for methadone 10 mg two times a day, over Xmas developed Prostatitis (its worse than PN) Good Luck and enjoy the good days cause your gonna experience a lot of bad ones, be strong. There are a lot of great people here who give good advice, I can't say much for the medical profession.

One more thing on eyelid tightness....thyroid normal? Exophthalmos? I assume they did thyroid?

If all looks normal, any chance of IVIG?

Interstingly, my PN came on after herniated disc diagnosis, and spinal nerve root blocks. Complicate that with a sky high ANA....who knows? It is really hard to pinpoint etiology. The more one learns, the more one knows there are really few answers. Nerves outsmart us all. I have also surmised that autoimmune conditions hit people who have had major physical or emotional trauma within a few years of diagnosis. Hmmm. Gives credence to psychoneuroimmunology.