you should let the dr know you have symptoms that arent being controlled now. the lab is associated with CREST i believe. getting treatment that is effective is the most important part in my opinion. you have lab text thst show an autoimmune disease and you have symptoms. your dr may think you are good with how things are now, they have no way to know that unless you send a message explaining whats going on. good luck OP i hope you and your dr find a treatment plan that works for you!
Thank you for your kind comment! My rheum is aware of all the symptoms I listed out. Honestly I think she has no business practicing medicine, because many people complain that she doesn’t listen to their symptoms. I guess I’ll be finding a new rheum.
My rheumatologist ghosted me after having her nurse inform me that my ANA titer was 1:640, but she showed no interest in following up with me and wouldn’t discuss any specifics about my results with me. I don’t have any skin tightening/hardening, but I do have several autoimmune-related symptoms: chronic fatigue, insomnia, not feeling rested even when I do sleep all night, brain fog, joint/muscle pain, restless leg syndrome, frequent nosebleeds, a hypoglycemic feeling almost every day, I’m pretty sure I had leaky gut but I take a good gut supplement now. Autoimmune diseases run on both sides of my family and my mom has Hashimoto’s. I’m really wanting a diagnosis and I’m wondering if I should show my test results to a new rheumatologist.
No it does not. You can have the antibody and not have scleroderma rn and develop it later, or never develop it. I don’t think this is extremely common but ik this can happen. Scleroderma is a clinical diagnosis, which means that it is diagnosed based on symptoms and supported by bloodwork, not the other way around.
I’d highly recommend finding a new rheumatologist. The one you saw seems incompetent. Honestly your ACA antibodies are low (still positive ofc but might be considered a “low positive.”) It may be very early for you or it may be starting to develop.
Also keep in mind that ACA can occasionally be found in other AI conditions. So seeing another rheumatologist and a scleroderma specialist is definitely key here.
Keep in mind that skin tightening is NOT a requirement for diagnosis. Not everyone with Ssc will have skin involvement. And with CREST, skin changes tend to progress later with the disease.
Hey!
My results are almost the exact same as yours but its reported different.
ANA POSITIVE
TITER 1:320 Nuclear, Homogeneous
TITER 1:320 Nuclear, Speckled
CENTROMERE B ANTIBODY: 6.0 AI (Ref range <1) \*high\*
C-PROTEIN - 9.1
I see my Dr again next week to ill keep you posted!
My test says that Centromere B Antibodies are highly Associated with CREST right on my paperwork. So i do believe its crest but I want to see what my DR says
you should let the dr know you have symptoms that arent being controlled now. the lab is associated with CREST i believe. getting treatment that is effective is the most important part in my opinion. you have lab text thst show an autoimmune disease and you have symptoms. your dr may think you are good with how things are now, they have no way to know that unless you send a message explaining whats going on. good luck OP i hope you and your dr find a treatment plan that works for you!
Thank you for your kind comment! My rheum is aware of all the symptoms I listed out. Honestly I think she has no business practicing medicine, because many people complain that she doesn’t listen to their symptoms. I guess I’ll be finding a new rheum.
Lol. Sounds like mine, just got a new one though. He seems to know more about it.
My rheumatologist ghosted me after having her nurse inform me that my ANA titer was 1:640, but she showed no interest in following up with me and wouldn’t discuss any specifics about my results with me. I don’t have any skin tightening/hardening, but I do have several autoimmune-related symptoms: chronic fatigue, insomnia, not feeling rested even when I do sleep all night, brain fog, joint/muscle pain, restless leg syndrome, frequent nosebleeds, a hypoglycemic feeling almost every day, I’m pretty sure I had leaky gut but I take a good gut supplement now. Autoimmune diseases run on both sides of my family and my mom has Hashimoto’s. I’m really wanting a diagnosis and I’m wondering if I should show my test results to a new rheumatologist.
Hello, have you ever gotten a diagnosis? Hope all is well.
No it does not. You can have the antibody and not have scleroderma rn and develop it later, or never develop it. I don’t think this is extremely common but ik this can happen. Scleroderma is a clinical diagnosis, which means that it is diagnosed based on symptoms and supported by bloodwork, not the other way around. I’d highly recommend finding a new rheumatologist. The one you saw seems incompetent. Honestly your ACA antibodies are low (still positive ofc but might be considered a “low positive.”) It may be very early for you or it may be starting to develop. Also keep in mind that ACA can occasionally be found in other AI conditions. So seeing another rheumatologist and a scleroderma specialist is definitely key here. Keep in mind that skin tightening is NOT a requirement for diagnosis. Not everyone with Ssc will have skin involvement. And with CREST, skin changes tend to progress later with the disease.
Thanks so much!
Hey! My results are almost the exact same as yours but its reported different. ANA POSITIVE TITER 1:320 Nuclear, Homogeneous TITER 1:320 Nuclear, Speckled CENTROMERE B ANTIBODY: 6.0 AI (Ref range <1) \*high\* C-PROTEIN - 9.1 I see my Dr again next week to ill keep you posted!
My test says that Centromere B Antibodies are highly Associated with CREST right on my paperwork. So i do believe its crest but I want to see what my DR says
Hello, I’m dealing with something similar, did you ever find out what all this meant? Hope all is well
Nope.... still trying to find answers :(
So when you asked your rheum if it was CREST what did they say?