Oh Rob--just because you have no noticable symptoms, you could very definitely have a gluten sensitivity or intolerance. You should absolutely check into it. If your neuropathy has only been progressing for 3 months, you may beable to reverse much of that just by going gluten free. Your neuropathy could be the one symptom you have for celiac's.

Deb

Hi Rob:

Why not, just to be on the safe side, google "gluten free diet". You'll get a whole bunch of stuff that you should avoid, stuff that you can eat, etc.

At least, that's a start.

PN is no picnic. My hubby has had it for 18 years with no known cause. Only recently, through a spinal tap, did they find protein and his doctor is going about setting up something called IVIG which will replace the autobodies in his immune system (or something like that, I'm still learning).

20 million things can cause PN. Sometimes you find out why (like if you have been diabetic and uncontrolled for a few years, and you develop neuropathy), then YOU KNOW WHY YOU HAVE NEUROPATHY!!! You can also have a pre-diabetic condition, develop neuropathic symtoms and not even be a diabetic yet. See how much I've learned on these boards????

But for the others, well, it's a journey, taking this test and that test, and ruling out stuff. Have you ever had any disc problems, cervical problems, pinched nerve problems??? These too can cause neuropathy!!

Also statins (cholesterol lowering meds) can give you pain in your arms and legs. I had to go off of zocor many months ago because of the muscle pain I developed. I don't eat any meat whatsoever and I literally live on fish, chicken and veggies, produce, etc. Nothing with sugar, as I am diabetic and even though I am now controlled at the age of 59, I have developed neuropathy on the top of my toes. No pain, just numbness.

So please feel that you have come to the right place. We are all a bunch of friendly people here and you'll learn a lot. I know I have. I'm still learning.

Years ago, if you had thrown the words Idiopathic, and IVIG at me, I would have looked at you like you had two heads.

Now I just come on these boards and when I learn some new phrase, I google it up and store it in whatever memory I have left in my 59 year old brain.

Life' a bummer sometims but we thankfully have this terrific board.

I do hope you feel better and again!!!!!!

Rob, some things just jump out at me from your short story. First, that TSH is definitely NOT normal. You've got to understand that the cut-off for normal of 5.5 is probably about 3 points too high. Most people are symptomatic over 2.5. It is high enough that you urgently require further thyroid testing. The exact tests you need are a FREE T3 and a FREE T4. If you've ever had thyroid testing in the past, I suggest you track down the results, so you can see the trend.

Most people have a set-point for TSH which indicates their level of wellness. Any deviation and they won't make enough hormone for their body. So that while a "normal" TSH might be 2.4 for you for most of your life, the current reading of 5.5 showed a logarithmically increased outpouring of hormone, in response to your thyroid not making enough active hormone, T4 and T3.

I'd imagine you have some sluggishness, I'd guess that if you thought about, you just think as "quickly" or have as many thoughts in a minute that you used to. You might find your mood a bit flat, though not outright depressed.

That's because the first symptoms of hypothyroidism are generally the cognitive, brain symptoms. T3 is the active form of thyroid hormone. Most of ourorgans turn T4, made by the thyroid, into T3 on their own. But the brain has little capacity to do this. It relies heavily on T3 made in the thyroid.

Doctors who don't test for free T3 are missing out on a sensitive measure of brain function.

And it's insidious. I have hypothyroidism, but take hormone. Around January, I noticed I was "calmer", taking things in stride, but not particularly enthused about anything, such as awonderful vacation that was in the middle of the month. I didn't put it together with anything. When I saw my endo for a checkup, he suspected immediately that I was hypo, and the tests supported it. But still, THEY WERE WITHIN THE NORMAL RANGE. Just not the normal range for ME.

The B12 is also lower than one would wish. Check out Rose's posts on B12 and you'll learn everything you need to know about it.

And with low B12 and hypothyroidism, you might have an overactive immune system. So it would be worthwhile to get thyroid antibodies measured, to make sure you are not attacking your own thyroid.

Which brings me to the last thought: I've put up charts on http://lizajane.orgwhich work like spreadsheets to keep track of labs. Changes in numbers are important, as well as a thorough workup. I urge everyone to get a copy of their labs before leaving a doctor's office; asking them to fax copies, and then keeping track of them yourself. It's one thing fora doctor to have a pile of labs covering 10 years scattered through achart' it's another to see a spreadsheet, which puts everything in order for him.

In terms of gluten, as Melody says, it's also a relatively common cause of pn. And it has an immune element. But as long as you've been eating gluten, I'd not stop right now. I'd get the testing while still eating it, and then decide about eliminating it.

JCC has posted wonderful guidance about gluten. But the tests are on thecharts, too.

I'm going to send you some links, not just to the general website, (www/lizajane.org) but to some of my personal charts, so you can see what I mean.

http://lizajane.org/PN/Users/lizajan...thy workup.xls


A few more things about your care and your doctor. If he thinks that because you've had acute onset, you might have GBS, he is correct. There is sensory GBS. But then, he's obligated to look for it and treat it. It's serious and can be treated. It's an autoimmune illness. Most people with GBS, I believe, seem to be being treated with IVIG.

I'm not sure why he's waited so long to do the nerve conduction studies; I'd have thought he'd have scheduled them immediately upon seeing you, plus, a lot of bloodwork to see if it's an acute autoimmune illness.

Good luck; please advocate for a full and extensive evaluation of your problem.

--you could have an acute onset small-fiber syndrome,and that would NOT be readily apprehensible through EMG and nerve conduction studies, as these tests only measure the function of larger, fully myelinated nerves. The smaller, lightly myelinated and unmyelinated fibers that subsume the sensations of pain and temperature (damage to which can produce all sorts of symptoms, including those you describe) cannot be tested in this way, they are just too small. Usually, these are tested through quantitative sensory testing, sudomotor axon reflex testing (a test of autonomic function), or through skin biopsy that quantifies the density of the smaller fibers.

A large number of acute neuropathies that aren't caused by injury have toxic or autoimmune components, but it often takes a while to find a nuero who is aware of the variety of tests that may need to be done. Many neuros are unaware of a lot of the serum tests for particular kinds of antibodies, for example. Some will even say if you have normal nerve conduction studies, you do not have neuropathy. (These neuros should be handed a number of the papers linked to in the Useful Websites section, and then lectured about not keeping current in the field. )

I wish you luck in finding a neuro who will take a comprehensive approach--but it wouldn't be a bad idea to take Liza Jane's spreadsheets with you anyway--not only are they good for tracking patterns over time, but they may suggest avenues of investigation that a doctor would not ordinarily think of.

you have there! Is there a "story" to go along with it?

I'd like to chime in and add (since most of the bases have been covered well)
and ask you to elaborate on WHAT supplements you decided to take, and
are taking now, and their doses.

Thanks all. I do have the EMG tomorrow and I will go armed with a long list of questions. I will keep you all posted - you are the best!