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-   -   Anyone know if these symptoms link to PN? (https://www.neurotalk.org/peripheral-neuropathy/19347-symptoms-link-pn.html)

possumtrot 05-10-2007 12:10 PM

Anyone know if these symptoms link to PN?
 
Or are they just other stuff going on w/my body? I have had mildly for the most part elevated wbc (usually in the 12-19 range w/58 the highest) and swelling of the ankles behind the ankle bone for the past couple of years with the puffy ankle part firstly being annoying and now to the point that it disturbs my gait. No official diagnosis of PN yet by a specialist, but have had 7 other drs say pn is what I have.

Over the past year and a half I have gotten very serious about figuring out what the problem is...started with serious pain on inside top of the arch, hypersensitivite and burning/sunburn sensation on soles and pins and needles effect in toes (mostly on the ends of the big toes but sometimes in various digits) which a year ago got so bad I had pain, numbness and pins and needles going up the front of my right leg. Was referred to a neuro-surgeon who ran all types of tests including mri, eeg, emg, ncv and determined not a surgical candidate. Was then referred to a neurologist and pm dr. Neuro said I was okay but to see pm dr. PM dr. did a series of 3 transforaminal injections on L5, S1 which helped the leg issues but left the burning soles and pins and needles toes. Also traveled several hours to another specialist who did nothing but give me custom insoles which of course did not stop the burning sensation.

Should mention I have had every blood test known to mankind w/no remarkable findings of any abnormalities except elevated wbc. Been tested for diabetes 7 times in last 12 months and I'm not even prediabetic (hooray). No infections were found but have been on all types of antibiotics to try to reduce wbc. Was forced to go to a specialist who says elevated wbc due to pm dr injections (but wbc elevated way before that time). Could it be due to the problems w/my feet? I do have high bp and cholesterol. Any links on that front? I did have an ovarian cyst removed but wbc is still elevated.

PM dr cannot do anything else so has referred me to the neuro who did my ncv. I've had 1 appt. w/him and will see him again in another couple of weeks. Right now I'm just trying to figure out if any of this stuff is related to the pn. Thanks!
This is my first non-intro post so am a bit nervous if anyone will answer...

dahlek 05-10-2007 03:54 PM

I can understand your
 
frustrations. It does seem as if you have doctors who are doing some of the correct tests. I myself can't say that YOU have PN or not tho.

I suggest that you read all the 'sticky's up at the very top of the forum. I strongly urge you to lake a quick look at www.neuroexam.com as it's about how doctors go step-by-step in their testing and for details of the processes http://lizajane.org The latter has been put together by LizaJane and others here have contributed to it as we each came here thru different PN causes or effects. Also read some other folks' posts, you may find that there are answers to some of your questions there.

Also be sure to get copies of your tests or summaries and blood work - putting that info into Liza Jane's work sheets will help you get a better handle on what might be going on.

Make no bones about it...pain is definitely a GIVEN here!
As for posting, don't worry, it gets easier! - j

glenntaj 05-10-2007 04:09 PM

Of course we'll answer.
 
On this board, that's never been a problem. (We're a haven for the long-winded. Myself among them. :) )

But more to the point, though you may have "had every blood test known to man", I would suspect you haven't had every blood test known to the peripheral neuropathy specialist.

There's a good listing of these in the following document that's in the useful websites section at the top of the board:

http://www.questdiagnostics.com/hcp/...a lNeurop.htm

and even this is not exhaustive (but I'm willing to bet you haven't had every one of these). Given your elevated white counts, I'd be particularly interested in the results of an immunofixation electrophoresis (blood and urine) to scout for any monoclonal antibodies (M-proteins); these have been implicated in many neuropathies. (Since you've had elevated white counts, I'm assuming they've done a preipheral blood smear to type your leuckocytes/lymphocytes and eliminate any possibility of blood cancers. Many of THOSE condtions can also lead to neuropathy.)

There's also the possibilty you have an inherited neuropathy--there are many more of these than people think:

http://www.neuro.wustl.edu/neuromuscular/time/hsn.htm

AND--if you had an ovarian cyst, there are certain endocrinological syndromes that should be checked out--how much delving has been done into your thyroid, adrenals, and pituitary?

When we all want to get REALLY exhaustive, we go to the charts at www.lizajane.org. This[ is a series of spreadsheets that has just about any test we could think of for neural symptoms, both peripheral and central. It's also a wonderful tool to track test results over time (and suggest other possible tests to doctors).

Given what you've said about the injections, it's possible you have problems at the spinal base or with the cauna equina that branches down from there; what kind of lumbosacral MRI's have you had? It'd also be interesting to see results of cervical spine MRI's--too many doctors think lower limb symptoms can only result from lumbosacral problems, and that's nonsense.

The unfortunate part of all this is that neural symptoms from spinal problems can exactly mimic those from peripheral nerve problems, and this is part of the reason investigations of neural symptoms can be long and expensive.

Can you give us more detail on exactly what's been done, and what it has/hasn't shown?

possumtrot 05-10-2007 06:47 PM

Wowzers...lots of stuff to look at. I'll have to organize all of the different tests and results to maybe begin to answer your questions, but keep in mind I am N.O.T. a medical person now, although I used to be fairly fluent in medical lingo, understood quite a bit. Somehow after my seizure that part of my reasoning is gone from inside the ole brain and now I can barely say some of the terms out loud (although I have no problem reading or writing them). Thanks for the links!
edited to add: I didn't know there were different types of mri. I've had them done on lower back, right foot (pain is worst there).

dahlek 05-10-2007 06:55 PM

Never having been
 
anywhere NEAR anything medical prior to PN, it's hard, I'm also somewhat 'chemistry impaired' in that learning Chinese or Latin is a more likely possibility. Even if you cant get all of it, any background puts you light-years ahead of many of us slogging on thru all the info to figure out what the fudge is going on.

No question is too strange or silly here. I've asked them as have others.
We'll all get to a less painful place soon I truly hope - j


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