Second opinion in Missouri USA

[Blurry62]

I need some referrals for a rheumatologist in central Missouri. Someone up on current literature, treatment etc... I don't feel like my current doc is listening to me or taking my gca symptoms seriously. He is very slow in treating me as they ramp up.

[Bronni]

I don’t know what to tell you, honestly. I live in Massachusetts and have had 3 rheumies who, IMHO were only useful for prescribing. I have learned so much more from this forum than from my doctors. Sadly, I didn’t find it when I really needed the support in my first year. Hopefully someone will reply who lives in your area 🙏.

In response to your post on diet, I don’t really follow one, but eat healthily. I do know, though, that I can’t tolerate sugar or alcohol, so avoid both 🙁. Last year my husband was advised to go on a vegan diet by his cardiologist, so we did that pretty strictly for 12 months. It definitely made me feel ‘healthier’, but did nothing for the pmr - I still had my ‘annual’ flare! Good luck.

[Blurry62 in reply to Bronni]

Do you still have headaches?

Why is there such a huge gulf between the rheumatologist's level of care/understanding and a GCA patients need?

[Bronni in reply to Blurry62]

Sorry I should have said I have pmr not gca. And I have no idea why our drs are so inept in dealing with our conditions. Most people seem to educate themselves! Obviously gca is a serious problem and if you’re having headaches etc, the collective wisdom seems to be, go immediately to the ER and seek help. I’m sorry I can’t help more. Bronni x

[PMRpro Ambassador in reply to Blurry62]

It is a rare disease - many GPs/PCPs have never seen it and many rheumatologists have seen only a very few cases. Then many believe the stuff they were taught years ago when training - and a lot that is to be found in textbooks is just plain wrong! We are a massive community of experienced patients - who have walked the walk.

[piglette]

Best of luck finding a rheumatologist, I have just dropped rheumy number 4. Good ones seem to be like gold dust.

[Blurry62 in reply to piglette]

May I ask, why did you drop them and what qualities are you looking for in your rheumatologist?

I wonder, sometimes, if I'm expecting too much.

[piglette in reply to Blurry62]

I paid for my first one and he did diagnose PMR, he then wanted to see me weekly and I became a cash cow. I did not pay for the next two rheumatologists and they would ask me questions as if I had just started PMR, one got me to take a lot of blood tests and xrays, I then discovered three months later she had not bothered to look at the results. The last one I paid for, he diagnosed a frozen shoulder which I am pretty certain was wrong and gave me a steroid injection, which was actually quite painful and did not work. He suggested I should come back and have a steroid injection in the other shoulder.

[Blurry62]

There is a good one there for RA and gout. There is little experience with GCA and I've been referred to Kansas University. They have more experience specifically with this disease. Thank you though.

[Blurry62]

Since that last post, I've discovered there's GCA specialists in St Louis at WashU as well. I don't want to disparage rheumatology care at MU in any way. They saved My life at the onset. They treat allot of people there quite successfully. GcA is rare. I found KU through the vasculitis foundation - my gp is sending me there. Thanks.