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Visit to UAB specialist


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#1 piperpetpete

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Posted 26 January 2010 - 12:33 PM

Finally had my appointment with the sclero specialist at UAB. I was very impressed with the doctor and felt like I was REALLY being heard!

However,I am still looking for answers. At this point, she feels I am not having active sclero symptoms. Yes, I have the SCL70 antibodies but she thinks the burning and tingling pain I have had for months is neuro related. Possibly mitro, enzyme.....wants me to have EMG and NSC plus maybe a muscle biopsy. The Lyrica I started three weeks seems to be helping some so that is good. Anyway, wanted to let you guys know what is going now. I guess the journey continues............ :o

#2 Shelley Ensz

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Posted 26 January 2010 - 01:00 PM

Hi Piperpete,

I'm glad you had a good visit at UAB. It will be interesting to see how your upcoming tests turn out, won't it? I know how hard it is, waiting and wondering, feeling antsy for some firm idea of where things stand.

I wish I could lend you some patience for it, but I checked my supply of it this afternoon, and found I am running a bit low. I could send you some flowers though, how would that be?

Hang in there. :flowers:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Jeannie McClelland

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Posted 26 January 2010 - 02:38 PM

Hi Piperpetpete,

Sounds like your sclero specialist is on the ball and isn't it nice that you established a rapport right off?

So how do you feel about the non-diagnosis, if that's the right word? Relieved or not? Any idea when you'll see the neurologist? Will that be at UAB too?

I'd also volunteer to lend you some patience, but my handsome hubby said I'm running a serious deficit. :blush: How about I give you an I.O.U. and my best wishes?
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
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(Retired) ISN Artist
International Scleroderma Network

#4 judyt

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Posted 26 January 2010 - 03:46 PM

Patience!!! what's that!!

I saw the Cardiologist on 15 January, Rheumatologist on 20th, blood tests 21st, HRCT 22nd January it is now the 27TH!!!!!! and the only results or response available is the Bloods!!!

I just said to the Receptionist at the rheumatologist. Office that I probably have to learn to be patient - she didn't disagree.

Other people must be using up the supply meant for me.

Congratulations to Gene Enz on his successful lung transplant.

Warm hugs to everybody.

Judy T (sweltering again in NZ)

#5 piperpetpete

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Posted 27 January 2010 - 04:41 AM

My next step is the neurologist in Atlanta and testing.
My thoughts right now are kind of all over the place. I have the marker, but its inactive at this time and I still don't know what is causing the burning,tingling pain.
I guess I just WAIT :D

#6 Shelley Ensz

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Posted 27 January 2010 - 12:38 PM

Don't worry, Piperpetpete, we can put you to work in the meantime, lending your shoulder as a comfort to all the others who are also going through the long and difficult diagnostic process. Maybe you can even manufacture some patience and sell it to others as an ISN fun-raiser. :blink:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 Snowbird

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Posted 27 January 2010 - 12:51 PM

Hi Piperpetpete

Glad to hear you were impressed with the doctor, it's key!! Good that the Lyrica is working too.

You're right, the saga's never end, do they? Good luck with the tests and keep us updated!
Sending good wishes your way!

#8 piperpetpete

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Posted 27 January 2010 - 02:08 PM

LOL I can do that!!!! I know there are many out there who went years....I'm just working on 15 months!