Sorry this is long - introductory and questions!
 

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.

Megan--
 

--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.

Many thanks!
 

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
 

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?

Megan, you've gotten LOTS
 

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 - :grouphug:'s are needed directly for and to you!
Pain free moments, even a couple? - j

Adding my 2 cents to it
 

Megan,
You have gotten some of the most valuable information you could possibly receive. And from people who are really in the "know". We have all spent many years suffering from similar symptoms. And as a result spent years putting together the answers you just got. I hope you treat them like the treasure that they are. Good luck to you and we'll always be here.

Silverlady

Roxie,Is yours affecting the sensory and motor nerves also? If so then the difference is the cause , autoimmune vs toxins. There has never been any indication in any of my blood tests including Athena and in the lumbar puncture of anything autoimmune going on.

knowledge
 

thank you for all the info. I am reading and thinking about it all as much as i can. i can see that i did not get the best work up at all. perhaps that is becasue i told the doc what caused the pn, the prolotherapy shots. on the other hand, it may be that i had somthing else going on and the shots sent me over the edge. i do not see the neuro doc for 3 weeks, he is gone, but i may try to see another one for a second opinion. i am going to call my hospital and see if there is a neuro who specializes in pn.
thanks for all the info, although i consider myself to be faily intelligent, it is quite a bit to understand and tajke in.
steff

You've gotten the best advice there is here and there's little I can add other than take the B-12. Even if you're not deficient, per say, it can help heal nerve damage. Yep, that's right....heal it. I know. I'm one that B-12 has helped. My symptom reversal has been nothing short of a miracle. Other than that: Welcome to the board! :)

Hi, a normal blood glucose tests will not show if there is any prediabetic condition going on, which will give the same symptoms as being a full blown diabetic, a 3 -5 Glucose tolerance test will show it up if there is a suspicion of diabetes going on and do you know what levels was accepted as in the " normal range" on your b12 test ?
i hope you can find some answers.
Brian :)

Thanks to you all!
 

I just lost the post I was sending, so I will try again (hope it doesn't come up twice).

Thanks for all your responses to my posting they are very much appreciated.

To Glenn, I have looked at all the links you posted. I have a few questions forming in my head, so I will post them on a new thread. I have had the Algorithms article for a few weeks and found it very useful.

To Rose, Melody, Brian and Jarrett thanks for your suggestions re. B12. My B12 level was 267pmol/L and was considered normal....however I have read some research that suggests there is a grey area for levels under 298pmol/L. I have also read that there is a test called the Active B12 (holotranscobalamin) test which is toted to be more accurate (????). My plan is to ask my GP or neurologist for this other B12 test. If they refuse I will begin to take the oral B12 supplement that you suggest.

To Dahlek and Joe for info on toxins and LP's. These are my next place to go although I have had a hair analysis done as a starter for the toxins and mineral deficiencies.

To Sliverlady, Roxie and Liza Jane thanks for general info and encouragement. Very much appreciated!

Megan, I hope all the info helps you get well.....or at least provides you much less pain!

Everybody brilliant,Glen you are unbelieveable,and yes to Lumbar
Puncture and sooner the better. But get rested and read it all.
Keep posting,your wore out and overwhelmed,we are all that way
at first...I hope your sleeping Sue

Sue you are right!
 

Megan you are so hurting, not understanding and plain out SCARED at first that it's only with luck that you get a doc who LISTENS and TESTS! I believe most of us have been there for a short or long while.....
It's a whole different language, about what you have, how you are being tested and why, and then what it all means....
Just get a diagnosis in the ballpark and work your way up the food-chain from there. I won't lie, it IS hard work, but, if you show you are willing to get 'there' wherever that is, I bet your doc [docs] will go to bat for you. If you trust the doc, honesty and candor can go very, very far.
GO get the tests, they are your only path to really know what IS, then it'll be up to you to work backwards to decide the whys.
Right now, it's the what IS and what can be done about IT that is key to plain old living and LIFE! The shoulda's and coulda's are past, just go forward, and IF I had a bulldozer at my disposal I truly would lend it to you! - j

Start Taking B-12 - No kidding!!!!
 

Megan:

If your B-12 level is 267 as you indicated, holy moly, you need Methyl B-12.

Doctors do not understand about Methyl B-12.

Your body is obviously not absorbing it.

I do hope you can go online and get the Methyl B-12.

Not promising miracles but that reading really is low for someone with neuropathy. It really made a world of difference for some of us.

Best of Luck

Melody

B12
 

Your B12 is in the low range and worthy of treatment. Your doctor should have drawn a methylmalonic acid and homocysteine to prove that this is what was making you this ill.

But you do seem much more ACUTELY ill than most of us, who have had symptoms come on a bit more gradually, and it sounds as if you should be closely and aggressively followed.

If your doc has drawn the mma and homocysteine, start the methylB12 immediately. But you are probably one of the few people for whom a wait of a few days would be worthwhile if the other tests weren't drawn yet.

Just that as suspicious as you B12 is, your diffuse symptoms coming on quickly could be something else.

So I'd say blood test THEN lots and lots of B12. But quickly.

Oops. I just added to my post because I now see that Liza Jane beat me to it. Yes to what she said!

If you want further testing, the thing to insist upon would be methylmalonic acid and homocysteine. If you are deficient, wasting time taking another unreliable B12 test is not a good idea.

I would insist on the two tests, MMA and Hcy, early next week. And then I would begin taking methylcobalamin on the way out of the lab. If they won't perform the tests early next week, I would begin the methylcobalamin anyway. The important thing is your health, and this is a possibility. If you need it, the damage will continue until you get it!

rose

Reply to Melody
 

Thanks for your message re. the Vit B12. As my B12 level was tested with pmol/L unit of measurement it may not be as bad as you assume based on what you are used to. Pmol/L is a SI (Systeme Internationale) system of measurement which much of the world uses. If you use pg/ml then that is called CU's (Conventional Units).

The conversion factor for B12 is: 0.738 so
- to convert from the conventional unit to the SI unit, multiply by the conversion factor;
- to convert from the SI unit to the conventional unit, divide by the conversion factor.

Therefore my B12 level of 267 pmol/L (SI) converted to CU's; I need to divide 267 by 0.738 which gives me 361 pg/ml. Does that sound better? I know it is still not as much as in Europe and Japan where it is purportedly said that they use a 550pg/ml equivalent cut off (if I am correct).

Any feedback on 361pg/ml would be appreciated!!!

Megan:

I'm sitting here reading your post. I am 60 years old. I never did that well in math in school. I excelled in language skills because I can speak 5 languages.

I wish math was a language that I comprehended, because you should have seen my face when I read your post.

I read it three times.

The best line you wrote was :
--------------------------------------------------------------------

to convert from the conventional unit to the SI unit, multiply by the conversion factor;
- to convert from the SI unit to the conventional unit, divide by the conversion factor.
-----------------------------------------------------------------------

I should have studied harder.... lol

I know that others will come on board and understand what you wrote.
I only wish I had the brains.

I'm pretty, but stupid lol lol lol

Melody

Hi Megan,

I haven't read through all of the posts yet, but you were asking about a Lumbar Puncture. I had one last year. It wasn't that bad. The worst thing was a headach that lasted for most of a week.

With the Lumbar Puncture they were able to rule out may diseases to include MS, CIDP, and many types of cancer. I think it was worth it to at least rule out things that I didn't have.

Good luck. You are in the right place.

Megan, Rose is our B12 expert so i hope she comments, but i wouldn't like to be that low myself, up around the 1000 mark at least would make me feel a hell of a lot more comfortable when your nerve's are damaged.
Brian :)

Well add me to the list
 

Megan,
I'm not liking that B12 figure even with the conversion figured into the total. I remember reading that anything below 500 is suspect when suffering from neuropathy. I totally agree with what Rose is telling you. She has much personal experience and has spent many years studying B12 problems.

Billye

The B12 test is unreliable, and that still is a very undesireable level for anyone with symptoms.

Although less common, people have been deficient while testing in the 700s.

rose

ROFL!!!! Oh, Mel! You're not stupid! If you are than I are too! /me don't do maths. I wish I could make sense of the post too. So I'll have to go back and read that one several times and hope a bit of it gets past the math-police. :hug:

LOL Hey guys.......don't feel like the Lone Ranger on this one......I have NO idea what all that means! LOL

Megan?
 

Did you get the blood tests--methylmalonic acid and homocysteine, and THEN start the B12? Please update us.

Update on MMA
 

Thanks Liza Jane for the follow-up. No I haven't had it done yet. MMA is not a standard lab done in Australia for B12 deficiency. I have found a genetics service lab who do it but I will have to pay for all the tests and transport of sample, as it is not covered by our medicare system, so it will be expensive.

On Wednesday this week I will be seeing my neurologist. My plan is to listen to her and look at the results of all the tests done so far. See if there is another obvious cause for the PN and if not, (especially she wants to label me 'idiopathic') I have a couple of things I will tell her I am not happy about (one definitely being the B12) so I will ask her for the pathology request form for the extra B12 test, MMA and homocysteine to be done.

If she refuses or thinks it is unecessary I have a couple of other doctors who I've researched who I know will order them for me. I know it is a bit drawn out this way but I do not want to start on high doses of Vit B12 without having further testing, as it makes it difficult in the future for ongoing treatment and medication cover/subsidies.

I am still feeling very unwell along with all the parasthesias and gastric discomfort - so I'm looking forward to Wednesday in the hope I can start to get to the bottom of all this......but rest assured I will be upping my B12 intake significantly one way or another even if there is another explanation for the PN.

I get from your post that you already are taking B12. How much and for how long?

This is an important answer, because it could mean that your expensive MMA test will be useless.

rose

Hi Megan,

I thought I'd throw my two bobs worth in here.

I have CIDP and it took 8 months to receive a definitive diagnosis (Given that I live in the sticks, this is in no way surprising!). I also had other unforseeable anomolies which threw a spanner in the works, but that's another story. :)

A lumbar puncture is a common diagnostic tool in this case and as others have said, it will rule out a few things.

I know you'll receive alot of great advice here.

Just out of curiosity, Whereabouts are you in OZ?
There are a few Aussies here, myself included and depending where you are in the country, we may be helpful with docs etc..

I don't post often but a pm will always get to me.

All the best
Noong

To Rose
 

No I have not started the B12 yet. I want to have the tests done first, if at all possible and very soon.

I will be tackling all this with my neuro tomorrow. If my results indicate another cause for the PN then I will purchase some Methyl B12 and boost my levels regardless.

To Noong
 

I have sent a pm to you. Thanks!

Megan,

Good :)

rose