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Old 10-26-2009, 08:05 AM #1
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Gyrene Gyrene is offline
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Gyrene Gyrene is offline
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Cool Progression

Quote:
Originally Posted by Westie View Post
The burning in my toes and front part of the foot has in the past few weeks moved into the ball and sole of the foot making it painful to walk or stand for long periods. The toes actually feel OK most of the time.

At the same time I'm feeling an increasing burning sensation, right in the centre of each palm and some mild cramping sensations in the hand.

Can anyone tell me if this sort of progression is typical ?
My PN started about 2 years ago, and it too was in my feet. Something about the feet being the furtherest from the heart. Mine started with a pain in my heels when I first got up in the morning that I can best describe as standing on half of a golf ball. Got progressively worse until my chiropractor recommended a "special insert" for my feet. Nothing done there except the cost, $259.00 Then on to a podiatrist. Gave me a slip of paper with the model of SAS shoes he wanted me to wear. Another $150.00, again with no relief. Finally, my daughter (nurse) recommended a neurologist.
By this time, the pain had spread to my hands. A lot like yours, just the slightest hit on the sides or the tops of my fingers felt like back when the teachers used to rap your knuckles with a wooden ruler for being naughty. (Waaaay back when )
The neurologist, in his initial testing, determined it was indeed PN, but was insightful enough to do some bloodwork, and recommended a hematologist. His testing, including a bone marrow biopsy, produced a diagnosis of , now get this, Waldenstroms Macroglobulinemia. Rare type of blood cancer. So, now, I have already taken four sessions of Rituxan infusions, but, the results are disappointing, at least to me. Reduced the IgM from 7,700 to 7,100. Should be in the range of 350. Gonna be a lot of days spent in those lounge chairs, I'll tell you what. Or, as I'm dreading, starting on the chemo. Oh well, at least there's a diagnosis to work from, thank God.
Good luck with your PN. It ain't for the faint of heart, that's for sure. But, with the right treatment, it can be manageable. Stay in touch here. There are a lot of wonderful people in here that, in a lot of cases, can provide you with avenues of treatment that maybe no one has tried for you as yet.
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Old 10-26-2009, 07:50 PM #2
dahlek dahlek is offline
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dahlek dahlek is offline
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Default I would make an appt if you can?

w/a neurologist ASAP! Otherwise, you may find yourself in the ER in excruciating pain as I had...five weeks after my toes got 'numbish'? Things progressed...and when it got above my ankles and got my fingers and palms I called my GP..who said: Go to the ER...they really didn't do much there? By then NUMB+PAIN was up to my knees and elbows? Other than determine I HAD SOMETHING. Saw the neuro two weeks later who'd determined it to be merely 'PN'. My case turned out to be CIDP....a cousin of Guillan Barre. Essentially your immune goes overboard and attacks your nerves instead.
Don't ever tell a doc what you think is happening? Just explain simply as possible and as concisely as you can HOW FAST things are changing and how it hurts!...
Best to get help asap rather than the ER...Ideally the immune testing done asap... which most docs dont/wont do until later? SIGH! That all is key to stalling damages done in the future.
Bring w/you this 'index'? It mite help - read thru it yourself and only YOU can determine which aspect fits your issues. Better that you give the docs the clues than they find them on their own? After all, THIS IS A RELIABLE SITE! That always helps keep you outta the 'nutcase' factor, ya know?
http://neuromuscular.wustl.edu/naltbrain.html
So, don't be scared? Go forth and assert yourself fiercely! [But, diplomatically] First treatments are for pain relief-some work? Some put you into another planet! Work hard to describe HOW any given drug works to help aleive pain. Some only do a little? Some a LOT-but the side effects are? well, creepy or unpleasant.
ONLY YOU KNOW that something is seriously NOT RIGHT! At this point? getting help is key. What to do next, is up to you!
Hope always and please, PLEASE keep us up to date on how things are going.LEARN ABOUT this all and beat it! And, don't panic! Hope is what you need to find in a doc - go with him/her! - j
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Old 10-29-2009, 03:02 PM #3
Westie Westie is offline
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Default Thanks to all

Quote:
Originally Posted by Gyrene View Post

My PN started about 2 years ago, and it too was in my feet. Something about the feet being the furtherest from the heart. Mine started with a pain in my heels when I first got up in the morning that I can best describe as standing on half of a golf ball. Got progressively worse until my chiropractor recommended a "special insert" for my feet.
I can definitely identify with the golf ball comparison. This started for me after the PN moved back from my toes leaving them largely pain free. The scholl pads that slip over the toes can provide a bit of cushioning.

I've had PN for four years now. Still searching for a reliable dx and hoping a forthcoming liver scan will show up the degree of damage there, which looks the most likely source. Also awaiting a visit to a different consultant.

Been taking supplements for about 1-2 years as per the stickies, my B12 level is about 1800. I'm not sure how much the supplements help but I'm going to stick with them until such time as I ever see evidence that they don't.

The remitting and relapsing nature and changing symptoms of my PN puzzles me a bit, but just from reading on here you understand the variety of causes, complications and severity of pain.

Best wishes to all,
Westie.

Last edited by Westie; 10-29-2009 at 03:33 PM.
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