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Biomarker for Diffuse Scleroderma skin has been discovered!


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Little update on me


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#21 debonair susie

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Posted 14 February 2010 - 05:17 PM

Dearest Sweet Pam,

I emapthize with you, battling such a troublesome issue. when it comes to a fungal issue, as Aspergillus...you have my attention.

Why, why, why they have such a problem confining/treating this?!

Is this related to sinus? I'm curious, in that I have had such issues for quite some time and I believe an ENT is my next route.

I am keeping you in my closest thoughts, Pam.
Take care and please keep us posted?
Special Hugs,

Susie Kraft
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#22 Sweet

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Posted 16 February 2010 - 12:19 PM

Thanks everyone!

Susie, they think it may be related to the mass they removed out of my right maxillary sinus back in May. Not sure if you remember, but they sound a mass on a CT, and didn't know what it was, so sent me to the Guru ENT in Seattle. He went in and surgically removed it. It was aspergillosi fungamatus, I had the coated tongue issue about 5 months prior to this already, and so I figured in my pea brain that once he got rid of the fungi in my sinus, the tongue would clear up. When it didn't I started going to the doctors. First they thought thrush, then a tougher form of yeast, then thought "Hey maybe it's related to the aspergillosis" so put me on anti-fungals, and still not a change. So now they are a bit stumped, so want to do the biopsy. It could still very well be the fungus, but as you say it can take a very long time to treat it. The meds are fairly toxic though, so they've decided (and I agree) it's best to biopsy it, make sure we know what we are dealing with, before they kill of my liver trying to treat it. We'll see..... hmmm just remembered I'm supposed to make that appointment...... LOL Could I be subconsciously trying to forget it?
Warm and gentle hugs,

Pamela
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#23 kiwimum03

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Posted 16 February 2010 - 11:23 PM

Hi Pam,

just wanted to send you big hugs. I hope all goes well with the Biopsy and they can figure out what it is and get on with treating it.

Thinking of you!

Irene

#24 Margaret

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Posted 17 February 2010 - 10:32 AM

Hi Pamela ,

Just wondering if you made the appointment for the biopsy? We need to keep you on your toes to get rid of this mess!!!

Take care, Everyone.
Margaret

#25 Sweet

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Posted 18 February 2010 - 05:02 AM

Oh Margaret,

You are the second person today keeping me on my toes. I'm picking up the phone right now to let the infectious disease guy know which ENT I want to see, and then I guess they will make the appointment and call me.....doing it right now.....promise.....dialing the phone....... :P Ok, just got off the phone, and gave the message to the nurse. :VeryHappy:

Thanks for caring so much. :emoticon-hug:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#26 Shelley Ensz

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Posted 18 February 2010 - 01:05 PM

Margaret, thanks for keeping Sweet on her toes! And Sweet, good for you, for setting the ENT appointment in motion.
Warm Hugs,

Shelley Ensz
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#27 smac0719

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Posted 21 February 2010 - 03:12 PM

Hello Sweet,

You have sure been through a lot over the past year and I am hoping for a diagnosis and sucessful form of treatment for you soon. Your positive attitude will surely be beneficial to you during your healing process.
You'll be in my thoughts.
I may have Scleroderma, but Scleroderma doesn't have me!

#28 LisaBulman

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Posted 22 February 2010 - 03:56 AM

Pam,
Please keep us posted and please make the appointment! I have had issues with cysts under my tongue for over a year and the ENT keeps opening them and stitching them open. It is unpleasant to say the least. Hopefully they will be able to find a quick fix that isn't toxic!

Thinking of you,
Lisa
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