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linda C

How Often Do I Need Tests?

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Hello

Im new to the forum.

Ive been told I have symptoms of UCTD for four years. I am 43 with a growing family and dont work outside the home anymore because of fatigue.

 

I have blood tests about every 18 months. Ive had my heart and lung function tests done once and they were all clear. I have the puffy hands, very little feeling in my fingertips( I have to use my little fingers to operate touch screens) , Raynaud's, ana thing, arthralgas, tummy problems and heart burn and sclerodactyl (not that sure what this Is). The doctor says that I might get scleroderma because I have the nucleolar antibodies but they can't tell until I develop severe symptoms, and that I might just get better.

 

How often do I need to get tests such as heart and lung function and blood tests?

Im in Australia and the medical advice so far has been see the specialist once a year, have blood tests occasionally, and youll be right.

 

Should I be insisting on more?

 

Thankyou.

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Linda,

Welcome to the forums! I'm sorry you're here due to your diagnosis of UCTD. But this is a great place for support and information. You ask about Sclerodactyly. This link will provide some information. This is when scleroderma affects the hands. You might ask to see about physical therapist about hand exercises. Hand exercises have helped many of us.

 

I was diagnosed 4 years ago and I get monthly bloodwork, quarterly tests for lung and a heart ECHO every 6 months. I have minimal GI involvement so I received baseline tests during year one and haven't had anymore done in 4 years. You really should get baseline tests and then the frequency of the other test is between you and your doctors. Keep track of your symptoms and don't let anything go too long before you see a doctor. Things can be slow, but some things can come on really fast. So just know how you feel.

 

Please stay in touch and let us know how you are doing.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Linda,

 

My rheumatologist wants me get blood test done every six weeks. This time, he wants me go through every 4 weeks due high liver enzymes and low blood count. My pulmonary specialist wants me to go through PFT and CT scan every three months.


Kind regards,

 

Kamlesh

 

 

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Welcome to the forums, Linda. I am glad you were able to find us and hope you will find some of the information and support you need among this great family. I have to say I'm not impressed by a specialist who says you have sclerodactyly but won't make the diagnosis of scleroderma. Is he or she saying she is hesitant to take drastic treatment measures without more severe symptoms? Are you also seeing a rheumatologist? In my opinion you should be seeing someone more frequently than once a year. A lot can change in a year. You need to keep a close watch on your Raynaud's and make sure you are doing everything you can to keep warm.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Linda,

 

Welcome to the Sclero Forums I'm so very glad you've joined us. I'm really sorry to hear it's due to illness however.

 

I see that you've already been given some great links, so I'll just add that how often you have blood work really seems to vary from rheumatologist to rheumatologist. Mine did a lot, and very frequently at the beginning (7 years ago) and now it seems to be only every 1-2 years unless he's seeing symptoms that are concerning him. Now my primary care physician (primary care provider) is another story. He/she (I have two) like to check things every 6 months.

 

Again welcome.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Welcome to the Forums Linda,

I am sorry to hear about your diagnosis of UCTD. I think that you have done all of the necessary, and your doctor has you on a regular check up schedual, so that sounds appropriate as well.

 

It all depends on how you are feeling.

 

Hope you stay well.

Big hugs &


*WestCoast*

 

********

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