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Stef

Very Frustrated, Could Use Some Direction

35 posts in this topic

Janet

 

I should have also mentioned that you can have positive ANA bloodwork and still be diagnosed as UCTD because the clinical symptoms for scleroderma may not be presenting themselves you can also stay that way forever and never get worse, no guarantee either way what will or will not happen of course. The key is to ensure each of your symptoms are being monitored/treated by your doctor(s) routinely so that each symptom (no matter what disease it causing it) is being looked after for you. I believe that also includes our peace of mind ;) .


Sending good wishes your way!

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Stef,

 

Good luck with your appointment on Wednesday. Will be thinking of you.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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Hi Everyone,

 

I wanted to post an update.

 

I went to Pittsburgh, PA and had my appointment with Dr. Thomas Medsger yesterday.

 

I was very pleased with how the appointment went. I was there for a total of 3 hours, and was seen by 2 doctors (one of which was Dr. Medsger). There was a very thorough history and physical taken; a complete skin exam was performed, as well as a nailfold capillary test (which confirmed Raynaud's).

 

Unfortunately, I still don't have many answers, at least not today. Dr. Medsger and I had a lengthy conversation about lab screenings for auto-antibodies. He spoke of frustration in the rheumatology field as many auto-antibodies are measured via ELISA testing vs "the old-fashioned way" (a longer, more expensive process). His recommendation was to have all auto-antibodies retested at UPMC (which is where his clinic is located) as they use the older method of testing, to ensure the results are accurate.

 

The good news is I do not have signs of skin thickening. I do have traits that are considered Scleroderma traits, but the doctor does not want to confirm or deny a diagnosis until the SCL 70 is repeated through his laboratory.

 

He told me the medication I am currently taking is what he would recommend (Prednisone and Plaquenil). We discussed recent lab reports (other than auto-antibodies), and there is some concern as my CRP total (C Reactive Protein), SED rate, and C3 / C4 compliment proteins are much more highly elevated (indicative of more inflammation and possible damage in the body). He feels we may have more of an idea of what's going on when the results are in.

 

I was very impressed with Dr. Medsger and his team, and would highly recommend his services. Hopefully, I will have more answers, soon!

 

Stef

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Hello Stef

 

I am so glad the appointment went well and although you may not yet have a definite diagnosis it's not because no one is interested or could not care less, it's because they're being thorough and professional which is how they should all be always!

 

I hope that you now feel confident you're going to get somewhere, the right people are working for you and with you so that whatever outcome you get will be the right one. As I've said before we Sclerodermians are a very select group of people so should you become on of us be honoured! :lol:

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hey Stef!

 

OK, I know you'll understand when I say "what good news!" :lol:

 

Hooray for Dr. Medsger!!

 

You'll let us know more when you know more, won't you?

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Stef,

 

Glad your appointment went well. Hang in there, they will find answers for you.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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Hi Stef ,

 

I am glad that you liked Dr. Medsger. I did, too. Gareth had the same problems with positive blood results from ELISHA but negative in his lab at UPMC. Dr. Medsger did come up with the + ANA, speckled pattern, diffuse cytoplasm, though. Gareth's had the + AntiRNA-Polymerase 1/111 done 3 times at ELISHA and all 3 times it's been positive. Dr. Medsger's lab said it was negative. All we know is that the Plaquenil is still working!!!

 

Take care, Everyone.

Margaret

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Margaret,

 

I know! It's horribly frustrating sometimes! Even with reputatable labs, there are still potentials for incorrect results. Auto-antibodies aren't the only lab results I've personally had "trouble" with. I went through 6 different labs and sets of tests as I had inconsistencies when my doctors tested for AMA (anti-mitrochondrial antibodies...liver related), until it was concluded 4 out of 6 tests were positive, and all positive tests showed the same level of AMA...ridiculous to have it done so many times!

 

Hugs,

Stef

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Stef,

 

Sometimes the frustration is worse than the disease! :wacko: I also have had more than one positive Scl-70 but no skin thickening (thank goodness). Unfortunately that seems to cause more confusion among the doctors than conclusions. Then thanks to my HMO (Health Maintenance Organization) (grrrrrrrr) my specialist can't seem to get my internist to order the right type of ANA. I think it's the old fashioned one with complete reporting that she wanted. Guess I'll be donating some more blood samples again so they can try to get it right. Hang in there. Best advice I ever got was to keep a symptom diary. I got a calendar with enough space to write down my symptoms each day (most days there's enough room, hee hee). It helped me to see patterns and associate some symptoms with triggers in my daily life. Hope you find the answers you're searching for!

 

With good thoughts,

 

Heather

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This is really a "shot in the arm", figuratively speaking, of course!

 

I'm so glad that you were pleased with how things went, Stef. It's

so nice to feel as though you're going to get some answers to long

awaited questions, I'm sure.

 

(I totally agree with everything Amanda said in her post)!

 

Thanks for sharing the good news with us...we're as happy about it

as you are!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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