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Old 03-03-2007, 06:18 AM #1
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Default First Post - Appreciate any advice

Dear friends,

I hope you don’t mind that term – having read this forum for the past few weeks I feel like I know many of you. I hope you realize what a great service this provides to people.

My story: 48 year old male, reasonably healthy. About 3 months ago (Nov ’06) I noticed what I would call strange sensations on my arms and legs. It felt like I was being touched – slight pressure that would migrate all over. Then a few days afterwards I experienced a severe burning sensation on one arm – 3 hours. That passed. Since then my symptoms have progressed to pin pricks, tightness, burning feelings, deep aches, some tingling and numbness but not that much. It is mostly in my legs – ankles up to mid thigh. The progression has been slow and barely noticeable day to day but I definitely feel worse today than 3 months ago. I also had numbness around my eyes and a severe twitch in one eyelid. I frequently feel off balance, and I started getting slight muscle twitches – fasciculations (I can’t believe I know all these terms now). And – not to leave anything out – I occasionally have these sharp shooting pains in my gums and teeth. I think I may have had the facial numbness at a low level for a long time prior to this.

I suspected MS but a brain MRI was normal. My glucose level was 110 – I do not recall it ever being an issue before but my last check up was a few years ago. My B12 was 480 - I had started a B complex vitamin a week before that blood test so don’t know if that could increase the level so quickly or not. My physical exam at the neurologist’s office was good – I have no muscle weakness etc. My thyroid TSH was 5.59 – just slightly high but my Primary care Dr. thought not significant.

I had been taking Pravachol, a statin, for almost 2 years. I take it because I have an artificial heart valve (surgery 15 years ago), not for cholesterol reasons. I have read that neuropathy can be a side effect. I have stopped it but my symptoms persist. I also take one baby aspirin per day for blood clot reasons, valve related, which I can not stop.

One neurologist gave me nortriptyline for pain and to sleep better. I do not think it is working though. He thinks I have a Guillen-Barre variant disease – “acute peripheral neuropathy” he called it. I am scheduled for an EMG test this coming week.

I have started taking some vitamins and supplements on the advice of the many of you on this site. I do believe my fasciculations and the facial numbness and eye twitches are better.

Needless to say this is all worrisome to me. The pain is getting worse. I would certainly appreciate any thoughts or advice from this group. Obviously I need some more blood work and maybe MRIs of the spine.

Regards, Rob
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Old 03-03-2007, 06:51 AM #2
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Rob, welcome to the forum.

I am hardly an expert at this and I am sure the experts will come along soon. Your B12 level is low, 480 is not a good level for neuropathy. I take 2400mcg daily of B12 and the last time my level was checked it was at 1277. It does stink that neuropathy is a side effect of so many things. Mine is from a B12 deficiency I developed because of celiac disease.

Good luck--watch for the others!!!!

Deb
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Old 03-03-2007, 08:00 AM #3
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Default Hello I am new too!

Dear Rob,

Hello and welcome to this forum. I, like you, am new to all of this, I made my first post yesterday. I absolutely agree that this forum is excellent. I too had been reading the posts here before I plucked up the courage to post myself.

I am by no means an expert on PN and I am still waiting for a firm diagnosis (I see a consultant neurologist on Monday) but I absolutely understand what you are going through. My nightmare with all this also started 3 months ago! So far all my blood tests have be “normal” but I am still waiting for the B12 result, but like you I have started to take B12 supplements. I have had a nerve conduction test (normal) but no other tests apart from blood tests.

I think the worse thing is not knowing, so it is good that you have the EMG test coming up so soon, although I know if you are anything like me it will be a difficult and worrying time until you get the results. I understand from Melody on this forum that this is a pretty conclusive test for PN. I hope that the neurologist I see will do one, I will certainly ask for one to be done. I live in the UK and it takes ages to get tests done because our national health service is strapped fro cash, but I hope it won't be too long.

I have a lot of pain in my feet and this is spreading to my hands, I get aching stabbing pains and pins and needles in my legs. This has all be very traumatic as I was a fit health 51 year old woman 3 months ago with a passion for hiking and backpacking so the fact I if I walk for more that 15 mins I am in agony is very upsetting well lets be honest its is devastating! I have be unable to work since mid Jan partly because of the pain but also because of the anxiety and depression, in fact it all happened so suddenly I think I was in shock for quite a while. When things like this happen “out of the blue” is is quite normal be be worried. My GP has given me Trazodone and Tramadol. The Trazodone is an anti depressant ( I think nortriptyline is one as well). The Trazodone does nothing for the pain (or my anxiety) the Tramadol just takes the edge of the pain. If you are in pain make sure you ask for some decent pain relief – something that works. For what I can gather getting the right medication seems to be about trial and error so don't worry if what you have been prescribed does not work, something will!

This is a worrying time but I hope you yet some positive news following the EMG, let us know how you get on. I will be thinking of you.
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Old 03-03-2007, 08:02 AM #4
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Default Thanks - another point...

Thanks. I forgot to mention initially that when I was young (maybe 2 years old) I had a lot of digestive problems. Apparently the pediatrician diagnosed it as celiac (I am not sure if just by clinical observation or blood test - it was around 1960!). Unfortunately my parents are deceased and I can not locate that doctor - he is probably deceased as well. I recovered from that period however and have not had any real digestive issues since.
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Old 03-03-2007, 08:13 AM #5
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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

Last edited by darlindeb25; 03-04-2007 at 05:52 AM.
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Old 03-03-2007, 10:24 AM #6
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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!!!!!!
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Old 03-04-2007, 02:23 AM #7
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Default Thoughts, late at night

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.
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst

Last edited by LizaJane; 03-04-2007 at 10:32 AM.
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Old 03-04-2007, 07:00 AM #8
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Default And, to add to the fun--

--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.
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Old 03-04-2007, 07:09 AM #9
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Question Interesting username...

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.
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Old 03-05-2007, 10:54 PM #10
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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!
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