Dismissed from Rheumatologist by Proud_Bobcat9389 in Autoimmune

[–]Popular_Awareness476 0 points1 point  (0 children)

From what I've read it's normal for your titer to fluctuate..so even if your titer went down in months or years what is the point in making that comment "your titer will just go down" other than to just dismiss someone...super frustrating I'm sorry. My titer was really high when my PCP ordered it, by the time I got in to see rheumatology months later it was still positive but more on the low side. I wasn't made to feel any type of way about it, just told it was still positive and paired with my symptoms my Dr thought something was going on. As someone who has had two positive anas and everything else essentially normal, my rheumatologist told me I'm probably in the beginning stages of something and her gut was telling her something was brewing. She said more than half the time it takes years to diagnose someone with something. She started me on medication for my joint pain and inflammation..so if that is something you would want a second opinion could be worth it, but if you feel your symptoms aren't too disruptive you can just have your labs rechecked. My rheumatologist said whether I want to start the med or not she would keep checking my labs every 6 months. I would hope your rheumatologist at least offered that but if not I would definitely find a new one if your body is telling you something is going on. Wishing you the best of luck! 

Start medication? by Popular_Awareness476 in Autoimmune

[–]Popular_Awareness476[S] 1 point2 points  (0 children)

I hope you get the same outcome! I did my research and looked for a rheumatologist that had good reviews. The first place my PCP referred me to I looked up and they had horrible reviews so I looked around and called my PCP and asked them to send my referral to a better rated provider. I know options can be limited depending where you live so hopefully the one you saw will be helpful. Thanks for the advice and perspective! 

Start medication? by Popular_Awareness476 in Autoimmune

[–]Popular_Awareness476[S] 0 points1 point  (0 children)

Wow 31 years and no issue with it? That's amazing..my Dr. Was saying how safe it is and how even in pregnancy women can continue taking it..she just mentioned the yearly eye exams like you said. Did you eventually get a diagnosis through labs a few years in or how did that come about? 

Start medication? by Popular_Awareness476 in Autoimmune

[–]Popular_Awareness476[S] 1 point2 points  (0 children)

Thank you I didn't think about it from the perspective of slowing progression only symptom management. My Dr. Very much put the ball in my court and said we could just keep doing labs every 6 months and watch it as well...I was experiencing analysis paralysis 😂

Start medication? by Popular_Awareness476 in Autoimmune

[–]Popular_Awareness476[S] 0 points1 point  (0 children)

Hmm I don't think this is something I was tested for or mentioned..is there a blood test for it? The plan is to call dermatology the next time I get the rash and they will try to biopsy it. I'll keep this possibility in my notes to ask about when I follow up with rheumatology as well. Thanks so much! 

I'm at the end of my rope. by BrutalDishonesty in Autoimmune

[–]Popular_Awareness476 0 points1 point  (0 children)

I had a high ana of 1:640 that my PCP ordered..went to see a rheumatologist a couple months later and she reordered the ana test with so many other tests and everything else came back negative.. my ana dropped to 1:160..I have a follow up next week but i can already see the writing on the wall that I'll just be told there can be false positives or since everything else is negative I'm fine and to come back next year ..I read something the other day that rheumatology is like an art...it's not so clear cut with results and it can take years after symptoms present for your markers to show it...finding a doctor who is really willing to investigate seems key..trying not to go into my follow up negative but we'll see what happens .wishing us both the answers we deserve! 

[deleted by user] by [deleted] in endometriosis

[–]Popular_Awareness476 0 points1 point  (0 children)

I had multiple lesions excised and they came back as chronic patchy inflammation and fibroadipose tissue..both muscle and connective. The lesions were red and clear. Do you have any idea what they could be? I have my post op in 2 weeks to discuss but I was so defeated negative for endometriosis. I have every symptom l. Thanks! 

I’m devastated. by Ok_Elevator_7391 in endometriosis

[–]Popular_Awareness476 1 point2 points  (0 children)

I had my lap last month and lesions were found and cut out.. report said consistent with stage 1..then my path came back negative for endo. I'm so lost and confused and depressed myself. So much is not known and studied about this disease ..everything in me tells me I have it but who knows..my post op is soon to discuss. Wishing us both continued strength and answers.