I have posted on a couple of other neuro sites and had no responses but this looks like a fairly active site, so thanks so much for 'listening'!

Four weeks ago I was diagnosed with Peripheral Neuropathy. At that stage I had had burning/buzzing/icy sensations in my lower legs for about six weeks prior. Initially the burning/buzzing/icy sensations only occurred later in the day, then they became all day. This was when I was diagnosed. Throughout this whole time I have also had extreme fatigue.

At that time my GP ordered a random blood glucose and a B12 test. Both tests came back ‘normal’.

Within a week of diagnosis I started to feel the burning extending above the knees and in patches over my thigh, groin and in my forearms then fingers of right hand and around my lips, right cheek and chin.

I then developed nausea and liver pains one week after diagnosis. I went again to my GP who sent me straight to hospital fearing Guillain Barre, as the parasthaesias had advanced quite quickly since the previous week when he saw me. All my reflexes and muscle strength were good and the hospital sent me home. The nausea lasted eleven days and I felt quite sick and very fatigued throughout that time.

I returned to my doctor again the following week and he referred me to a neurologist who I saw two weeks ago. She took a fairly comprehensive history and again tested muscle strength and reflexes. She ordered lots of blood tests, which I've had done, and an EMG/nerve conduction test which was done this morning and a brain MRI on Monday Sept 3rd.

In the past week I feel that I am becoming more clumsy, tripping and dropping things but of course I have a very reasonable explanation each time it happens and maybe I'm just being hypervigilant and imagining things!!!!!LOL

I've also had some weird symptoms like extreme 'gut' pain episodes and excruciating right ankle pain which came out of the blue and disappeared within three days. Also mentioned to my neurologist that for some months I had been choking on my saliva a few times per week which wasn't normal for me. I have been having strong cramps in my calves (mostly at night) and twitches (fasciculations - I think they are called) in different areas over the past 6-8 weeks. The twitches tend to be over larger areas of muscle than I have ever had before although to date they only last a few minutes each.

I don't know if these seemingly disparate symptoms have any connection to anything........so

.....I am posting to see if any of you 'experts' can cast light on what may be causing all this. Does this progression of symptoms 'fit' anything in your experience related to PN?? Is there hope of an eventual diagnosis of the underlying cause?

Also wanted to ask about the benefit of Lumber Punctures. Have many of you had an LP as a diagnostic tool? Anyone with PN had a negative Lumber Puncture result?

Sorry.....almost finished. If the EMG/NCS is negative does this mean I do not have PN or what is going on?

I guess I just want to be as informed as possible before I next see the neurologist on Sept 12th.

--this may be just as long as your post, but hopefully helpful.

Just because one has "normal" nerve conduction studies and EMGs doesn't mean one does not have neuropathy. Most notably, nerve conduction tests cannot detect disorders of the smaller, unmyelinated fibers that subsume the sensations of pain and temperature--these fibers are just too small to be measured with that technology. NCV/EMG can only detect very gross disorders with larger, myelinated nerves, which include all motor neurons and the sensory ones that handle bodily position, vibration, and mechanical touch. Take a look at:

http://www.neuro.wustl.edu/neuromusc...other/axon.htm

http://www.neuro.wustl.edu/neuromusc...ory-small.html

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

Siince autonomic functions are also mediated by small, unmyelinated fibers for the most part, people with small-fiber syndromes often have autonomic symptoms as well. And it is common for people to have mixed types of neuropathies--predominantly small-fiber with some large fiber involvement, for example (especially some larger-fiber sensory involvement).

Also, one CAN get these type of Guillain-Barre type syndromes with acute/sub acute onset from autoimmune molecular mimicry processes. What often confuses doctors is that there may NOT be any motor involvement--and the usual thought is of "classic" Guillain Barre with motor involvement up to and including paralysis. I am certainly living proof of that--my acute onset body-wide burning pain started in my right foot April 12 2003, progressed from a small tingle on the bottom of my right foot to a searing pain over my whole foot in four hours, then was in my hands three days later, and in my whole body in ten days. I too had a HUGE battery of tests; I actually was sent into the hospital for MRI's, x-rays, lumbar puncture, numerous blood/urine assays--all negative/normal (and I was in severe searing pain). I never had reduced reflexes or motor symptoms. I was fortunate that I began to get some pain control from Neurontin, and became functional enough again to get an appointment at the Cornell-Weill Center for Peripheral Neuropathy, at which a skin biopsy showed severe small-fiber damage and de-enervation--though no definite cause was revealed (and probably never will be).

There have been a few articles written about this type of presentation, likening it to a "sensory" Guillain Barre:

http://jnnp.bmj.com/cgi/content/abstract/72/4/540

http://www.anesthesia-analgesia.org/...ract/104/2/438

There is also the theory that such symptoms can be caused by an acute onset autommune process at the level of the dorsal root ganglia, from which many of these small-fiber sensory nerves sprout.

There are over 200 known "causes" of peripheral neuropathy, and this doesn't even include neural symptoms that can be caused by problems with the brain or spinal cord, which can exactly mimic symptoms caused peripherally. Generally a thorough work-up is a long, expensive, process of elimination--and most people who say they've had "all the tests" haven't come anywhere near to that. A good guide to testing is the Liza Jane spreasheets:

www.lizajane.org

--very useful for not only suggesting tests but tracking results over time. I also recommend people look through the Poncelet protocols and Dr. Norman Latov's lists of serological tests:

http://www.aafp.org/afp/980215ap/poncelet.html

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

Also, two very comprehensive sites about neuropathy types:

www.neuropathy.org

http://www.neuro.wustl.edu/neuromuscular/naltbrain.html

(This latter one is the diagnostics entry point for the huge neuromuscular conditions database at Washington University of St. Louis' medical website. It is written primarily in outline form, and mostly for medical professionals, but it is extraordinarily comprehensive; going through the links and sub links reveals a wealth of info on neuropathy and other neuromuscular conditions).

Almost all of these are avialable at the top of this board under the "Useful Websites" heading, by the way.

There is a wealth of knowledge here--our databases and diganostic abilities probably overmatch those of most medical centers--so read, and post as many details as possible.

Thankyou Glenntaj for your comprehensive response. I will go through those links tomorrow when I am fresher, as I'm about to go to bed now.

I feel such a novice in all this and although I am very conversant with some other medical conditions this whole area is quite new to me....so lots of learning to do!

Also anyone........is a lumber puncture a worthwhile diagnostic tool.......or is it only useful for specific types of PN?

Megan,

Please address the B12 possibility further. It is one of the few things that can cause incredibly disparate symptoms, and the longer it goes undiagnosed the more damage.

It won't take you long to read my site (what's there so far), and it will give you the basics you need. At least your doc knew to check B12 serum (most don't), but that isn't enough.

rose

HI Megan! and Welcome!!
You have come to the right place for answers about PN! The people on this site are caring and SO informative when it comes to PN!
My diagnosis came from a nerve/muscle biopsy. It showed that I have Chronic Axonal Neuropathy. ALL of my other tests came back negative and I was starting to believe I was crazy even tho I had SO much pain.
I hope you are able to have the right tests that helps diagnose your problem. It sounds like you have a good dr.
I'm having IVIG infusions once a week now.....and many of us PN'ers are having and I think it's starting to help!
You can PM me or any of the gang there if you have questions......

I have axonal sensory motor long fiber polyneuropathy, caused by toxins. Every test i have had has been negative including a lumbar puncture except for the emg/ncs which showed what type of PN it was. I think a lumbar puncture is worthwhile to eliminate some possible causes and maybe uncover what is causing your PN. IT tests for a possible autoimmune, lyme, viral, bacterial as well as other causes. There are many autoimmune blood tests that can also be done.

HI Joe!
What's the difference between my diagnosis of Chonic Axonal Neuropathy and your diagnosis??

Megan:

Hi, My name is Melody. Welcome to our little group.

First thing you should do is start taking Methylcobalim. It's the best form of B-12. Doesn't matter what your B-12 level is. What the "EXPERTS" consider normal (for people with neuropathy), well, it's not normal. We should be in the 4 digit range.

Next thing you should do is copy everything that Glenntaj posted in his response to you. Paste it into a microsoft word document and print it out.

Bring it to your neurologist.

Glenn knows what he is talking about.

There are many many things that cause all types of neuropathy. My husband has been diagnosed with CIDP. Stands for Chronic Inflammatory Demylinating Polyneuropathy. My husband's mom had Guillian Barre when she was 53. Many many years ago.

Every single doctor we told this to poohed poohed us and said "no, it's not related to Guillian Barre. When I went on the Guillian Barre website, guess what I found? CIDP is a variant of Guillian Barre.

Do any of your parents or their parents, well, have they ever had Guillian Barre or MS or anything to do with nerve problems?

And they diagnosed my husband finally (after 15 or so years of neuropathy), well it took a Lumbar Puncture, and they found the protein in his spinal fluid and they said "Oh, there is auto-immune stuff going on here".

And when a spinal tap is done by a "good guy", well, my husband did not feel it. The guy used a fluroscope over the area and got it on the first try. It all depends on who does it.

So good luck on your journey. And come back and let us know how you are doing.

Remember, show the doctor what Glenn posted. Might even help him out a bit.

The guys on these boards know LOTS OF GREAT STUFF.

All the best

Melody

P.S. I've been taking 5000 each morning of the Methyl B-12.
NO more pins, needles, buzzing and burning. I am diabetic. I gather that's been ruled out in your case. Doesn't matter. Methyl B-12 saved my sanity and my life Give it a try. Look it up on Rose's website.

Hi Megan,

First, good on your GP for hospitalizing you for suspected Guillain Barre. That was very good thinking, so I like this guy immediately. Sounds like he takes ownership and recognizes a sick patient when he sees one.

Megan, you sound really ill, and I wouldn't want to hazard a guess until the neuro has really had his shot at you. You will probably need studies besides the EMGs, because they might not be abnormal YET, although they sound as if they could be, given the symptoms. You are clearly having something suddenly happen, and my guess is it's an inflammatory neuropathy, and that your neuro will want to order lots of blood tests (see the lizajane.org list of nerve antibodies). He might also want to do a spinal tap to look for abnormal protein.

Guillain Barre comes in many forms these days, and I believe that it is now subsumed under the heading of CIDP, inflammatory neuropathy. Let's just wait and see what the tests show.

Your GP might have put you into good hands. Who knows?

of very good advice. We all have come here with our nerve pains thru very different routes, but we are here to help and share with folks such as you.

That your docs have caught on to your real pain and are testing as thoroughly as they are NOW is soo important. All the referring to and fro is common at the start, but they have to test and get what they call their 'baselines'.

While some here have had unpleasant reactions during nerve conduction studies, I was soo far gone when I was properly tested that I could not even tell it was done! [First test -a questionable one, showing little 'loss' was done about 3 months after hospitalization, another 7 months later and a third a year after that.] Especially muscle reactions, due to muscle tone and strength werre normal for the first year. Things went down hill after that. BUT, it was that series of nerve tests and the spinal tap analysis that got me on an IVIG regimen that is 2 days monthly. Roxie and Melody can fill you in from their perspectives, but I am an advocate for the IVIG vs steroid treatments as it's got fewer long term affects. I can walk, drive and function, tho I hurt, and am grateful for every day I have.

I encourage you to read as many posts as you can in this forum! From the 'stickies' on back...as I believe that you might find a lot of answers to your questions and frustrations in those posts. Know truly that you are not alone!

Roxie, I'm so very glad you are feeling some good from it all now! That is a very super thing! You also put a good question out there about the different neuropathies...i urge you to look up the 'Poncelet' reference Glenntaj cited it's the 'aafp' one, I believe - about the 'fibers' affected.

Megan, as you can see, we all are looking for the 'secret decoder book' about doctors, testing and diagnosing issues. Hang in there, KNOWING as much as you can learn about what all is happpening to your body can help you understand with the dealing of what is going on. As for causes? Sometimes it's simple, unfortunately, most of the time it is not. This is not a 'thing' that a PILL can make go away? So, Since I am one of many here, and I don't think I'm being presumptious here - 's are needed directly for and to you!
Pain free moments, even a couple? - j