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Zaphoon

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Many of you have been following my case for the past two years and for those of you that are somewhat new to the forum, a V.A. neurologist, now recently retired, awarded me the ddiagnosed of PLS.

My hat is off to the V.A. clinic and regional hospital I deal with in Missouri and Arkansas. I had an annual evaluation with a GP followed up with a visit with the neurologist. The GP put his finger in a place where it didn't belong but I've since forgiven him. Those guys are just touchy-feely by nature, I guess.

The neuro fixed me up with more drugs (increased my dose of baclofen and added a script for gabapentin (cramps and pain). He also ordered a lumbar puncture to do a few more rule-outs.

I asked if we could still be looking at PLS and he said yes but it is still a wait & see. So, it remains the differential for now, as I understand it.

So, we'll see what further definition this lumbar puncture may bring.
 
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joelc

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Thanks for the update. I sure hope it brings you different results than PLS!
 

Zaphoon

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Thanks, Joel. The doc said I've been tested for everything under the sun. Whatever it is, it has been unrelenting.
 

abbas child

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I hope for a really good diagnosis, as well. Something those nostril pliers can fix. And then, without further ado, your stiff self can relax and become normal. When you get the lumbar puncture appointment, I'd be delighted to tell you again what to do so that you don't get "the headache"...

Best thoughts and prayers,
Ann
 

maryhahnward

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I hear you on the testing! I hope for your sake they find something as a result of the lumbar puncture and it is treatable....

Many good thoughts being sent your way,

Mary
 

brooksea

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Good luck, Kim! Hope the lumbar puncture proves something treatable!
 

GlenBrittle

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Thanks for the update.

Make sure they dont stick that needle where that finger went.:evil:
 

lydia

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Yes, good luck Z!

Do you have anything else on your differential? Or is it just PLS for now?
 

laurel

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Fingers are crossed here Kim. Hubby had elevated protein in the CSF and that was a clue to diagnosing his CIDP.
Laurel
 

Al

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Good to hear from you Zaph.

AL.
 

sadiemae

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Let me know how the gabapentin (neurontin) works for you. Les is on 300mg four times a day, however he is only taking in 2 times a day.
 

olly

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good to hear from you pz.
you know what they say.............no news is good news.
hope the lumber goes ok,let us know when it is.
hang in there,were all with you and love you to bits.
 

Zaphoon

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To answer Lydia's question, the neuro that retired on me last suspected this was some variant of PLS. If this is the case and it is found to be a one-off strain, it is my hopes this would be tagged, "Zaphoon's PLS" with the final diagnosis being questionable even upon autopsy.
 

rose

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Good news, kind of.

Maybe you just have PZ disease, all that's lacking is the name at this point...and you'll be famous.

The LP is not bad. Really. The shot used to numb is the worst part of it. I had mine sitting up, leaning over the exam table due to problems breathing laying flat. So, when they were done, it was really pointless to then ask me to lay down (re: possible headache) and they just let me leave after making sure there was no abnormal seepage. Is yours scheduled yet?
 

Zaphoon

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I'm expecting a phone call with the appointment date/time very soon. The impression I got from the doc was that the procedure would be done within the next 2 weeks or so.

I think the term "spinal tap" is a bit more user friendly than "lumbar puncture".

A "tap" seems more inviting than a "puncture".

Yep! I'd rather be "tapped" than "punctured"!
 
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