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Update On Gareth


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#1 Margaret

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Posted 12 February 2007 - 02:55 PM

Hi, Everyone ,

I got the long awaited phone call today from my son's ped rheumatologist doctor concerning the repeat blood work done the end of Jan. The Anti RNA Polymerase 1/111 is still positive and he still has the elevated sed rate. All the blood work for his kidneys, muscles and heart is in the normal range.....the doctor said that is a good baseline to start with. CT and X-rays for pul fibrosis is negative. He will have the Pul function test done next week....that should be interesting!!! Also.....he wanted me to call Dr Medgser and his nurse called back within the hour. He will be seen in Pittsburgh on March 7th.

I have learned so much in the 2 months since I found this site and thank all of you for the support and understanding you have shown. I will continue to ask and listen to all your responses on pains, meds, etc., to help me better understand just what Gareth is going through.

Take care, Everyone.
Margaret

#2 barefut

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Posted 12 February 2007 - 07:11 PM

Margaret,

That is wonderful news about your son's CT scan. I heaved a sigh of relief that he does not have any lung fibrosis. Good on the other blood work as well.

I don't know anyting about the Anti RNA Polymerase but it sounds like you're worried about that.

I'm keeping you both in my thoughts.

Good luck with your appointment in Pittsburgh, and keep us posted.

Best Wishes,
Barefut

#3 LisaBulman

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Posted 13 February 2007 - 02:21 AM

Hi Margaret,
Great news on the scans and most of the blood work. Please keep us posted on his visit in March! You have been such a great contribution this board, I'm so glad you joined! I'll be thinking of the both of you...

Hugs,
Lisa
Lisa Bulman
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#4 Margaret

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Posted 13 February 2007 - 02:34 AM

Hi Barefut....when I looked up the test the site I found said that Autoantibodies to RNA polymerases I, II and III are specific for systemic sclerosis (Scleroderma – SSc), particularly diffuse cutaneous SSc. It also said that these autoantibodies include a high frequency of heart and kidney involvement and poor survival 5 years after the first visit. His rheumatologist also said it is diagnosed of SS.

It's the poor survival rate that always catches my eye. Some of you guys have said that you have had Sclero for 10-20 years......I want my son to have that kind if he has to have Sclero.

Take care, Everyone.
Margaret

#5 nan

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Posted 13 February 2007 - 03:53 AM

Margaret,
Bless your heart! I am so glad that Gareth is going to see Dr. Medgser. Happy thoughts are sent your way!
Nan

#6 Heidi

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Posted 13 February 2007 - 03:56 AM

Hi Margaret,

It sounds like mostly good news.....I am glad. I am sure you are anxious to get him in to see Dr. Medsger. Please keep us posted and let us know how that goes.

Warm wishes,
Heidi