View Full Version : I met an awesome rheumy!

01-15-2010, 05:42 PM
I visited Phyllis' Rheumy yesterday and I wanted to come here and share the news with my WHL family as soon as I got home, but my hands were in agony after the testing. I've never had my joints pressed that thoroughly before...it smarted pretty bad and it was a long ride there and back, but it was SO worth it! I felt pretty sure things would go good, but I found out first hand that Phyllis has a GREAT rheumy. And now she's mine too!

She spent an HOUR with me! That alone bowls me over. I waited only 2 months to see a rheumy for an hour! How very opposite an experience for me...where it's usually wait 3-6 months only to get so little time.

We went over everything on my mind. She went over things with a fine toothed comb! Asked me questions no one has asked me before. So sympathetic! So gentle and thoughtful! And didn't act like she was the boss, like so many doctors do...I was included. Near the end of the visit, before she told me what she thinks it is, she asked me what did I think I have. I told her what my pcp and I have long thought...Lupus, Sjogren's and FMS. She said it does indeed seem like Lupus to her along with Sjogren's. When I told her the Plaquenil didn't help she said there's no sense in trying it again. 6 months treatment with that should have been sufficient. So she suggested we try methotrexate or imuran. She told me to do some considering about it and when I come back in three weeks we'll start treatment with something stronger. I could have kissed her feet!!!!!

I asked her is there another treatment for the motility problem in my throat other than the EGD I had done, that the GI said there isn't... and she said there absolutely is and filled me in about a drug called metoclopramide to help smooth the muscles out and help them relax so things can move down. Again... I wanted to kiss her feet!!! The motility just keeps getting worse. I have to warm up meals in the microwave a lot before I finish a meal because the food gets cold... my throat just doesn't want to swallow. Sometimes it's so painful. I've noticed when I have to take imitrex, it's extra worse for some reason. I have a hard time just getting jello to go down on imitrex days.

She took blood and wants to test for other things I can't remember and have never heard of...sending them to a lab in California.

Ever since this disease went up a notch on me I have visited 9 different specialists and no one treated me the way she did. This doctor wants to chase down the lupus monster and utterly destroy its presence...she...is... SUPER RHEUMY!!!

Samo, I told her about our discussion with the complement deficiency and lupus and she said...yes, lupus can create complement deficiencies which can create symptoms like allergic reactions (hives, rashes, swelling) and it is possible the complement deficiency can also create lupus. But there are complement deficiencies found a lot with lupus.

She said the C1q deficiency, along with them finding the elevated anticardiolipin antibodies, does help to point to lupus along with my other labs, symptoms, medical history. But the way she acted...she's not a rheumy that relies so heavily or solely on lab work...which a good rheumy should never do...they're supposed to listen to the other things the body is saying/the symptoms we suffer with.

I asked her why is it that I can be in so much pain and nothing show up on my lab work, including no elevated ESR...and she told me what happens is the AI disease attacks the body, goes into the flare...and even though the body stops attacking itself, the body is still suffering from the flare. Like when you injure something and it takes time to heal. That has been one thing in particular I haven't been able to understand from the start. She explained things so simple! She's not so sure some of my pain is FMS but a lot to do with getting over the flares. She said my pcp caught it in the act with that first lab. Just as my pcp has been saying for months and months...all of these things point to lupus and SS. She was absolutely wonderful! Gave me a shot of medrol too.Just a small dose for short term help but I appreciate it a lot.

Phyllis and I had a wonderful visit before my appointment and while we waited on the rheumy appt. Our sweet Phyllis is just as wonderful in person as she is here online with us! We had a great lunch together and she went to the appointment and stayed with me until they called me back, wanted to know what happened when I got out. What a sweet, sweet, wonderful friend! Phyllis, I can't thank you enough for your kindness! Hubby and I had a great time visiting with you and appreciate you so much! Can't wait for you to come up here to visit! (((((Hugs)))))

I just want you all to know...becoming a part of this group here at WHL has made a huge difference in the fight with this disease...this is a wonderful network of friends and support and I'm very grateful! Thanks for the help, thoughtfulness, prayers, and good thoughts!

Whaddya' know...it IS true...there ARE good rheumatologists! :cute:

01-15-2010, 07:27 PM
Hey, Hey, Hey Abbasgirl!!

Congrats on finding a good rheumy, although hard to find, they do exist!! I love my rheumy, she listens and we make decisions about my health together, isn't it great?! It is good that she confirmed the two roles that complement deficiency can play in AI diseases and that C1q deficiency is an indicator of lupus. Research papers are great; they are even better when a doctor confirms the information found in those papers with actual clinical proof. I am so happy that YOU are happy with your new rheumy. YEAH!!

01-15-2010, 08:18 PM
hi leslie,
i hope you are having a great friday evening. I just wanted to come around and tell you that i am just ecstatic about your visit with OUR rheumy. It breaks my heart to hear all of the stories of people struggling to find a good dr.....and here we are....we have one together. Made my day yesterday, and i continue smiling today.

Lunch was great, and time just flew by. Glad you all made it home ok.

01-16-2010, 06:05 AM
hi leslie,
i hope you are having a great friday evening. I just wanted to come around and tell you that i am just ecstatic about your visit with OUR rheumy. It breaks my heart to hear all of the stories of people struggling to find a good dr.....and here we are....we have one together. Made my day yesterday, and i continue smiling today.

Lunch was great, and time just flew by. Glad you all made it home ok.

Ladies, may I ask about this great rheumy?

01-16-2010, 08:20 AM
I am so glad that you have a good rhumey we all should have one who listens i am also blessed with a very good one. Bonita

01-16-2010, 09:23 AM
Im so glad that your appointment went so well =) We could all use a good doctor like that Im glad you found one!

01-16-2010, 02:31 PM
I am so very happy that you've also found a good rheumy and that she listens as well as explains. Sometimes, just this small point can make such a big difference in our ability to manage our disease.
And, it is so wonderful to have such a caring and devoted friend as Phyllis. I am sending warm hugs to both of you!

Peace and Blessings

01-18-2010, 10:53 AM
Thanks everyone... and the medrol shot is still helping out with a lot! TREATMENT...FINALLY! It's short term ...just for now but I'm so grateful!

Nonna...I'll send the info via private message, okay?

01-18-2010, 12:47 PM
Abbasgirl.......that is so awesome. Your post nearly made me cry and I never cry!!!! LOL! You are truly blessed & lucky to have found this great doc. I am so jealous. I have been told for 2+ years that I am "borderline" lupus but that's as far as they go with me. I saw a new rheumy not to long ago and he was very distant and didn't have anything to offer me. The tests came back "borderline" again, but he declared me "lupus free". I have so many of the symptoms of lupus and they just don't see it. I feel like banging my head. I am at a loss. But I am so happy to hear that you found this doc. We all deserve to be treated with respect and be a "partner" with a good doc and treat our symptoms as they appear. I wish I could find someone to help me. Continued good luck and blessings to you sweet girl! xoxo

01-18-2010, 12:55 PM
It's good to see you here again! I'm so sorry that you keep getting those "distant" rheumys. Would it be possible for you to try either University of Illinois or Washington University in St. Louis? It might be worth the trip.

01-18-2010, 01:18 PM
I agree totally....it took me 4 before I found the gem, just when I was ready to give up! I have now sent my daughter who also had a very thorugh visit with extensive blood work also being sent to CA. I was like the canary in the mine with the first 3..I went to check it out before my daughter would go and be subjected to an idiot. #4 was the charm, unfortunately even though they call themselves "specialists"..they are not so special. So glad you found "the one".

01-18-2010, 03:42 PM
Leslie - congrats on that wonderful news! That is wonderful! Phyllis - what a blessing you were able to give a friend. Happiness is being able to share blessing with our friends.

01-18-2010, 03:48 PM
Hi Marla.......I was hooked up with Dr. Alfonse Masi, one of the most esteemed rheumys in the country, over at U of Illinois College of Medicine here in Peoria IL, but he retired several years ago. He was a very kind man, but always told me I was right on the cusp of being diagnosed with lupus, and he never treated me for it. His buddy, another very notable rheumy, Dr. Mohammed Yunus AKA "The Father of Fibromyalgia" is here in town with a fibro clinic but I just can't make myself go. I am tired of docs and tired of trying to get a diagnosis. I spoke to my regular doc about lupus and treating me for it even without the labs and he said Oh those medicines they give for lupus are very strong....or something to that effect.......as if he didn't want to even get involved in treating me for lupus.......and so we just dropped it. I am too tired to fight for it any longer. I have fought for half of my life to get where I am today.....Nowhere!!! LOL (just a little humor there HaHa) But seriously.......you are right, I should probably go see what Yunus has to say about me. Maybe some day.... As of right now I just get by on my Vicodin and Tramadol, and Mobic, etc. and try to get through each day the best I can. Sorry, I didn't mean to hijack this thread...

01-20-2010, 02:46 PM
Oh Leslie, im SO HAPPY for YOU!!!!!! A GOOD dr IS hard to find! WOO HOO for YOu my FRIEND!!!!!!! YOU deserve to be treated by the BEST!!!!! XXXOOO