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Posted 10/24/2011 8:14 PM (GMT 0)
Thinking after my last Dr.s appt.  I have to look into this further.  I have a positive ANA 1:80 speckled, sun sensitive/burm & skin rash, hot/cold sensitive, joint pain.  So far only diagnosed with Fibro & Carpal Tunnel on both arms.  Any sugg. for what testing I should be asking for?  Negative for RA & Anti  dsDNA
Posted 10/24/2011 9:09 PM (GMT 0)
Hi cak, welcome to the forum!

The only suggestion I could make would be...see if your doctor is willing to run an ANA 8 ELISA profile. That would show if your body is making specific antibodies for any of the connective tissue diseases.

ANA can change, so many times it is a wait and see game. Both bloodwork and clinical symptoms are important. I would recommend taking pictures of any swelling or rashes you may get....lot of times these things will disapear before you have a doc appointment.

I'm glad you have joined us...there are many caring people here who do understand and can help.

Please take some time to lok over fibro 101 on the top of the page, Sherrine has put together some wonderful info for us,

Keep posting, we do care!

Hugs,Robin wink
Posted 10/25/2011 12:11 AM (GMT 0)
Thanks for the reply, I will ask about additional blood work.
Posted 10/25/2011 3:49 PM (GMT 0)
Hi, cak, and welcome!  Robin gave you a good answer.  Is your doctor a rheumatologist?  Many on this forum use a rheumy with their fibro but they deal with other illnesses, too.  They would know what tests to run that haven't been run to help give you an accurate diagnosis.  You could have a couple of things going on, too.  Many of us do.

 

Be sure to check out Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good links to start with are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. 

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from  you soon.

 

Sherrine

Posted 10/25/2011 9:08 PM (GMT 0)
Thanks Sherrine, I am seeing my rheumatologist in 2 weeks and I see my Neuro. next week. I will be taking more bloodwork and we will see if anything shows up. I will check out those links too. Thanks for the reply!
Posted 10/25/2011 11:23 PM (GMT 0)
Hi CAK,
I'm being tested for lupus, too. There is a double-strand DNA test that shows a marker that
about 50% of lupus people have. I haven't gotten my results yet, but will post when I do get them.
I have RA, fibro, sciatica, scoliosis, trashed knees (both operated on), every female surgery known
to man and situs inversus (upside down heart). Cool, huh? I'm hopefully looking at disability as
my spine is going on top of it all and it's getting harder to hold down the 40 hours a week.
Nana Monster
Posted 10/26/2011 10:56 AM (GMT 0)
I was at my rheumy yesterday...and Nana is correct...only half the time do those definitive markers show up...the other half are like me...no definitive blood markers, however positive skin biopsies for vasculitis, positive ana, elevated sed rates...and I cover about 6 of the criteria for lupus... this does not include the mri results and such...just the blood and tissue testing...

In my frustration for a diagnoses that went on for months and months, I actually made an appt with my primary care physician and we went over the tests, criteria, and it was clearly explained to me how gray this area of medicine is...auto immune is challenging at best...

Take a breath and have faith..you are in for a ride...but at the end when you finally have your answers it will all be worth it...

Stay well
Posted 10/26/2011 11:41 AM (GMT 0)
Thank you for the reply...I have been testing on and off for several years. I started a diary and will be persistant!
Posted 10/26/2011 11:46 AM (GMT 0)
It took 6 years, 3 rheumatologists, countless labwork and biopsies to get my diagnoses of MCTD ( lupus, scleroderma & RA ) and fibro.

I was originally diagnosed with Undifferentiated Connective Tissue Disease, meaning we know you have an autoimmune disease...we just don't know which one....ended up with an overlap of three CTD's

It is frustrating. but like what Mrs. Bubilz said " Take a breath and have Faith"

Good luck to you!

Huf, Robin
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