Thinker's story

[Allisonquast]

Oh my such a common story, I'm so glad you were finally diagnosed. I just wish that the time it takes to get diagnosed didn't involve arrogant, narrow minded doctors. We read these stories and realize how lucky we were that Colin was diagnosed so quick. You almost have to wish the worst symtoms on yourself so they stand up and take notice. Best wishes for a quick recovery. Remember don't take your cyclo at night. It sits in your bladder all night and makes your bladder mad.

[Thinker]

Oh my such a common story, I'm so glad you were finally diagnosed. I just wish that the time it takes to get diagnosed didn't involve arrogant, narrow minded doctors. We read these stories and realize how lucky we were that Colin was diagnosed so quick. You almost have to wish the worst symtoms on yourself so they stand up and take notice. Best wishes for a quick recovery. Remember don't take your cyclo at night. It sits in your bladder all night and makes your bladder mad.

Good advice on the cyclo. I was on it 5 and a half months and drank water like a fish. So glad that's behind me and won't have to be on it again. Rituxan if (I mean when) I get a flare. I posted an update in my last post and am now feeling much better than my initial story. I agree with your comment about some doctors. I just saw my gynecologist for my annual exam and even she commented "he sure didn't try very hard" when reading my medical history. Yes, anyone that gets a quick, accurate diagnosis with disease is very lucky indeed. Hopefully there will be more awareness among doctors and someday all patients will get a quick diagnosis.

[Tom]

Hello Thinker.
Sorry to hear of your bad experience with the first rheumatologist!
I think there are a lot of parallels with many of us on here! I had previous medical issues that were such that when I made note of it to a Dr, whether it was the oncologist, Cardio, Pulmonary,ENT or even my P.A. , I never really got an answer except that they expected me to have problems because of cancer surgery about the time this all started for me!
I also lots of swollen joints and the pain , oh man! I also had an elevated RA factor and was referred to a Reumatoligist. He looked at my medical records and said that with out the symptoms of why I was there to see him that there was not much he could do because RA is treated with chemo meds and I had my life time limit of them. I had the swelling but went away with movement and the pain was unbearable! Bless my P.A.,s, She stayed with me all the way and made sure I saw the people I needed for each complaint. The RA she sent me to gave me an open appointment and told me that if I swelled up again or had joint pain to come right in. I went another year after that and got sick , lost part of my lung and destroyed the rest of my lungs. I eventually had a full blown flare with Purura and went to the ER.
Every Dr I had dealt with over the previous 5 years apologized to me. The oncol. said vasculitus crossed his mind when I had complaints but the insurance would not pay for the test unless there was good evidence of vasculitus.
The rheumatologist told me that if would have treated me the year before for RA that he could have killed me but the new problem was that if I didn't get treated that I was going to die, If he did treat with the chemo meds as needed with wegs, that he feared he would kill me!
I believe I was fortunate to get a good rheumatologist from the start and I was fortunate to have a PA for my family phys. She refused to give up on my complaints, other wise I would never have gotten to a Reumy in time! I was that close to the end,literally, my lungs had quit mostly!
In defense of Rheumatologist, They treat autoimmune diseases and the one you saw should have been suspicious and referred you to a Reumatoligist that would stay with you and follow up!
It sounds like you have one that can and will care for you and the problem is that we have to trust their judgments, after all, that's what they specialize in!

This is a frustrating disease and is frustrating for Drs because they cant test for some things with out ruling out every other possible result.
I have little doubt that Dr would test for vasculitus when they see the symptom but the insurance companies were not so accommodating. They are now with new rule to the health care system!

I pop in on occasion and check the post and will be interested in following you plight!
It seems like we all have something in common that I have seen and that is, Slow to find the cause of our ailments! And then there is curiosity that never seems to be cured! But mostly I observe that we all have the same disease and many of us it affects different but we all are going for the same results and that is peace of mind and god willing a cure someday!
Good luck to you and yours!

[drz]

Just wanted to clarify when I said my kidney function was back to normal, I was referring to my creatinine level being back in the normal range. My eGFR is still low at 58 which would put me at the low end of stage 3 kidney disease. At my last appointment, my nephrologist said I didn't need to come back for 6 months so I guess it's just something they keep an eye on.

My eGFR has been stable in the 40's for past few years. Some times it hits 50+ and that feels good to me. My kidney doctors seem happy though with my readings although my creatinine levels are almost always above the normal limits. Once in awhile they hit the top level of normal and that feels good too.