Frustration and curiosity
Posted , 8 users are following.
Has anyone heard of the AVIS CTD test? I went to my fourth rheumatologist who was not
"convinced"upon clinical examination of my hands that I had RA even though previous regular RA blood panels showed I had. Well this test showed all negative and like a tenth of a point off of postitive on the RF factor. Crazy, dr is redoing my MRI on my hand and could be I dont have RA? Wow, this has been going on for 2 years.
0 likes, 11 replies
EileenH deena13493
Posted
https://www.lupus.org/resources/new-blood-test-can-help-doctors-diagnose-lupus
may be of interest to you. It isn't always bad when a doctor expresses doubts!
deena13493 EileenH
Posted
oh yes I am quite familar with the above test since I just had it. researched the heck out of it. just wondering if anyone other's doctors have ever used this.
EileenH deena13493
Posted
I assumed you might have but others might be interested too
lisa82473 deena13493
Posted
My RF Factor was negative. My CRP is just a little elevated. My doctor diagnosed me with RA just on the basis of an MRI on my right hand showing some erosion. My hand has never gotten worse and I don't seem to have erosion anywhere else. I have been at the same job for 27 years where I am constantly keying with my right hand. Maybe my hand is just severely over used? I would really like a second opinion but there are no other Ra doctors around here and if there where they would be out of network for me. The medicine makes me feel miserable. I had to go off it for a month when I had a sinus infection. My body felt better than it had in a long time despite the sinus infection. And the overwhelming fatigue I always get from the meds was going away.
What is the AVIS CTD test for and did your new doctor order it for you?
AlexandriaGizmo lisa82473
Posted
Hi I was diagnosed 20+ years ago and I am the opposite to you I argue that I don't have it and my rheumatologist is adamant that I do.
She says that every test I have is positive and what can't speak can't lie.
I take 0 meds and eat healthy and exercise as much as I can and I don't feel too bad
gaz1234 lisa82473
Posted
Hello
The best bit of advice i ever got was off a nurse who had worked on the rhuematology ward for donkey,s years.
I do have RA but you seem to have strong doubt,s as to whether you do or not.
The advice i got was " do what works for you as this thing is with you for life".
I would say to you sack the meds and see how you go, as they seem to make you worse anyways.
I know the doc,s do their best and God Bless Them For That, but we have a responsibility to look after ourselves to.
All the best to you
Kind Regard,s Gaz
EileenH lisa82473
Posted
There is a link above to an explanation of the test
lisa82473 gaz1234
Posted
I like my doctor and he seems extremely knowledgeable. I hesitated to take the meds but I scared myself into taking them because a former boss of mine also had RA. I watched her hands become so badly deformed over the years that they now go completely sideways.
Thanks everyone for all your feedback. I wish you all the best!
Mollyjr AlexandriaGizmo
Posted
Im exactly like you. My RF is 230 as of 3 years ago and they are anxious to put me on meds. I feel great and until I see or feel something I wont take them. I exercise and eat healthy too.
AlexandriaGizmo Mollyjr
Posted
For me and you it is personal choice and so it should be, sometimes meds are their first port of call, not convinced its the best option though, surely if it makes you feel so ill how can it be for the best
Gloria814 deena13493
Posted
I don't know that test but my diagnosis of Ra was also based on MRI of hands with joint erosions both hands. Have not been on any med in over a yr but it is slowly getting worse so will try a biologic again in a couple weeks. If i again have side effects then not sure what I will do. I also have crohns so the biologic will treat that too. It's really a tough decision since I don't have a lot of pain/ and can walk well and do most activity. I am easily exhausted and do have joint pain but minimal swelling. hard decisions.Good luck to you. Let us know your test results.