Hi all,

My name is Liz. I'm 28 years old, and in my senior year in a BSN nursing program. I was just diagnosed with idiopathic PN in Nov. 2006. My neuro says it is sensory only. Well. I have a slightly numb big toe, and occasionally I get a "flare-up" which leaves my fingers and feet feeling "burnt" for a few days.

The weird thing about my case is that I got really sick one weekend. I had just had my wedding in the middle of a very busy semester of nursing school. A few weeks later I had to have an emergency root canal, and my daughter had an acute respiratory attack which required 2 trips to the ER in two days. I felt like something "snapped". I became very ill. I was weak, couldn't eat, had abnormal burning sensations all over my body, and my legs were weak.

I went to my primary doctor who checked me for transverse myelitis, MS on an emergency basis. All my blood tests were normal, including vitamins, TSH at 3. With about 2 weeks rest, I began to feel better. I gradually started eating again, I got strength back in my legs, and the neuropathy symptoms became less severe. My neuro doc recommended B-1 supplements "just in case". I quit drinking ANY alcohol and sodas (I drank a LOT of soda). I have a gastric bypass, but that was years ago - so I don't know if that's related. My neuro is not much help, and tries to give me drugs, drugs...

The PN is variable. Some days are better, some worse. If I get stressed or tired I have the "sick" episode again (happened once since the first episode). Anyway, here I am. It sucks having this as a newly-wed with a 3 year old daughter. I worry about what the future might hold. I have an appt with the cleveland clinic later this summer, keeping my fingers crossed.

I have been reading all of your posts for a while now, and just decided to say hi!

Liz

Do you take B12? With the gastric bypass you might not be absorbing enough b12.

Hi nursegirl,i'm a old retired er (trruma Er nurse ) you know nurse old bag You are getting into some stress but rewarding job hope you contiue There are 2 very good places to go i think and your going to 1 of them,I have always thought alot of the Cleveland Clinic I wish you could get in sooner..I went to the Mayo Clinci they will give you a head to toe workup but it will help and the nurse in you find it very interesting.. Escuse me 1 of those bad nights..Why are some neuro Drs pill pushers don't know maybe they don't have answers no cure thing..Get copy of all records check them made sure they are in order,if not speak up to Dr,most of us have had to go throgh this.Also plese try the b-12 i was on it at your age i wish i had kept them up,also because of the surgery.. is part of PN,but there are some wonderfull people here that are going through it and i find everybody has been so helpfull,my Nuero sent me here it's been a blessing!! get out your pen and take notes you will good advice,i promise..Please keep posting and welcome. Many blessings Sue Polyneuropathys

Yes, I am fine on my B12. That's the first thing they thought of! I wish it was B12...

Thanks for the encouragement Sue. I'm glad to hear good things about Cleveland. I tried Mayo, but need a referral - and Cleveland is closer for me.

I'm up tonight. Having strange burning throughout my body ( head to toe ) and can't sleep. It feels like I'm dying!

Well, I'm still alive - so I guess I'll try going back to bed now!

Liz

Hi Liz & Welcome to the forum,
I would be getting on to a neuro that is a PN specialist, that will give you all the tests needed to hopefully find what is causing this.
Next i would get a copy of all tests that have already been done, if you go to http://www.lizajane.org/ download using Excel, fill in your tests that have been done already, that way you can even post them onto the forum or just keep them for comparison reasons as time goes on, you will also find all the other tests that can be done for PN there as well.
People with Alcoholic Neuropathy normally have very little B1 [thiamine] in their systems, seeing that all your vitamin tests were classed as in the normal range, yet he suggests B1, seems strange, i would be interested to know what that neuro classes as normal range with your B12 results.
I think you will find a lot of great information in the " important links and stickies " on the main page up top, good info on supplements, diet, and heaps of other important stuff that may help you.
Another great site is http://roseannster.googlepages.com/home, all about B12 well worth reading.
Anything your not sure on don't hesitate to ask, there really are some very knowledgeable people here that will help if they can.

good luck
Brian

--I would wonder about that illness you had.

There are a number of reports of neuropathy syndromes--including those that involve more than bodily extremities--happening after viral or bacterial infections.

The theory is "molecular mimicry autoimmunity"--the body's immmune system is marshalled to fight an invading pathogen, and does so successsfully, but the pathogen has a molecular structure similar enough to some specific bodily tissue (such as nerve) that the now activated immune system thinks that body part is part of the pathogen--and the immune system attacks that.

It may take time for the immune system to "shut off", as it does in cases of Guillain Barre--or it may never shut off, or remit and relpase, as it does in some of the chronic neuropathies such as CIDP (chronic inflammatory demyelinated neuropathies). There are also small-fiber neuropathies (conditions of nerve fibers without myelin) that are suspected to happen this way, though the immune mechanisms have not yet been identified.

I agree that you need neuropathy specialists to run you through a number of the neural antibody tests, as well as the standard autoimmunty workups (anti-nuclear antibody, etc.) if you haven't had those. The Liza Jane spreadhseets are excellent for this purpose, and for tracking your test results over time.

but, I have to ask you, as it's important: Didn't anyone tell you that you COULD experience some 'asorbtion' problems in the future, when you had the bypass?

I think a short history of me would help you understand...I was ultimately diagnosed with a sub-acute neuropathyapproximately 7 weeks after a 9 week bout with pneumonia. I was diagnosed by an ER doc who'd 'found something on the internet'. Complicating it was I had been hypo-throid for many years, but, it was all 'controlled'. After 15 months of non-treatment by one neuro [6months]and changing neuros, further getting a CIDP diagnosis [probability, contingent on 4 months of testing] by the head of an well-known neuro-dept head at another area teaching hospital- Well, I started IVIG. What a difference. I could/can walk again! I can function! A good thing for sure! One thing that neuro head implied, but was not really followed up on was that he'd suspected asorbtion issues. Well, it's true. I've had the CIDP/PN for four years. Last year diagnosed w/BC [the tame kind] and going thru a possible auto-I Hashi's as well. It's to be expected in a way. My attitude? Heck Why not one MORE? It's in very good company! Somehow I think this new doc in my 'stable' will be zeroing in on the asorbtion issues - and here I was blaming the multiple meds I'm on! This is just to let YOU know where I am coming from....I've read, I've learned from folks here and the 'net' which can be a fountain of info...providing you know what to look for and sift thru things to find out what YOU need.

Never, ever ignore your internal 'instincts' about what is going on in YOU! I had achieved all my diagnoses, second opinions and referrals, on that instinct, as I was NOT 'net conversant' at the time [and, in a fast time-frame--some folks here have been thru the 'process' for decades]. That 'little old voice' inside you works the best of any other 'experts' in the world.

Soo, what next? I suggest you read all the stickies listed at the top of this forum and think which aspects apply, or not, to YOU. Only YOU can be your best advocate. It helps to be armed with knowledge to ask, or fight for the tests and treatments you may need. Those stickies will teach you how the 'processes of diagnosis' should happen, and, unfortunately don't. IF you have a doc, a GP or Internal who YOU trust and can ask the right questions that ultimately direct you to the rite tests, docs and treatments, you can , if nothing else, have it[PN] become a non-issue, or at least, keep the mess from getting worse.

There are NO silly questions here, I've asked a heap of them, and, at times, continue to do so. Don't be shy! BTW, my 'history' is kind of tame compared to other folks here...we all have different PN diagnoses, causes, whatever, but we all have been, or, are going around that whole big block!

Super good thoughts till later - j

Thanks everyone for the good advice.

Brian, my GP prescribed B12 by injection "just in case", and then it tested off the chart (high) for several months, and my symptoms haven't improved. I had hoped it would be due to a B12 deficiency, but - no luck!

In addition to the sensory PN, I'm thinking maybe I have a small fiber neuropathy because of the weird migrating burning I get all over. The burning/tingling is not confined to my feet or hands. According to what I've read, PN usually doesn't progress to the hands until after the stocking glove pattern is established. But my hands burn a lot off and on.

I really don't know much about PN, just what I've obsessed about for hours on the internet.

I'm really starting to scare myself from everything I'm reading. I'm scared that I may have autonomic damage - my "female" libido function is messed up - and I've had some bouts of urinary hesitency. But this happens off/on. So I dunno...

I probably sound like a hypochondriac, but seriously, all of this is what has happened to me after that illness I had in Nov. 2006. This is all strange to me, considering that the only sensory deficit is in my right big toe. I don't know what's going on. I just hope Cleveland Clinic can help answer some of the questions for me.

Thanks all.

B12 shots are a shotgun approach. B12 should be taken daily. Like Vit 'C'
you cannot OD- its excreted in the urine, keep your levels way up.
Methyl cobalamin sub-lingual is the best absorbed. Don't bother with cyanocobalamin unless its impossible to get methyl.
I get mine from iherb
http://iherb.stores.yahoo.net/b12.html

Your problem may not be B12 malabsorption, but if damage has been done it can take a long time for the body to improve its situation.

It's good to have B12 "off the charts" for a long time, and, as mentioned above, daily oral methylcobalamin if possible.

rose