First Appointment with New Rheumy

Finally!! I had to wait 2 1/2 months to see this new rheumy and I have actually been feeling better recently (of course). Rheumy spent about 1 1/2 hours with me!! He was in no hurry, asked all the right questions. Spent a good amount of time reading my very carefully crafted 2 pages of notes. He liked the notes so well that he used those pages to add his comments and made it part of the file. When we were nearing the end of the visit, he said he was sorry that he wouldn't be able to answer the questions I had presented in my notes . . . but that we would get to that after he gathered more info on me. He asked me to sign 3 releases to get info from other doctors and he sent me for a slew of blood work. The lab took 14 viles of blood and a urine. I explained that I'd been dx'd with Lupus and then un-dx'd and that my blood work is boring and fairly normal other than the anti-thyroid, the inflammation markers and occasional anemia. He said that even w/o blood work Lupus is the best fit for all my symptoms. He thinks I have some overlapping issues and drew a very detailed diagram, using circles, showing how all this stuff overlaps and complicates the dx. He said that he treats symptoms, not diseases. He is also suggesting, eventually, a sleep study since I have such a hard time getting restorative sleep. He doesn't want to just medicate it, he wants to make sure there is not some other issue there (apnea??). So for now we will be awaiting the results of my blood work (he asked the lab to mail me copies ) He said that, for now, he doesn't want to do much with my meds except to increase the plaquenel to 600 mg and add salagen again. I am extremely hopeful at this point that I've got a good doc. I thanked him for taking my symptoms seriously and he asked me if another doc had not taken me seriously. . . he made me tell him who didn't!! I have another appointment in 4 weeks so he can go over the info from the old rheumy and the other two docs along with my blood work and make a game plan. Wooooo hoooo!!!! It was worth the wait!! Blessings!

Wow!  Rosie, sounds like you hit the jackpot with this new rheumy!  I'm so happy for you and relieved that you're getting the care you need!  An hour and a half eh?  That never happens.  Who is this guy and can we all get a referral to see him?!

 

You'll be eager to have that next appointment to go over the blood work etc.  Please keep us posted on what is found, not found.

 

Glad you're so happy Rosie, you sure deserve it!

 

Love

Ginny

Sounds great, Rosie! I hope I get as lucky w/my new rheumy -- only 10 more days till I see him!

Thanks Hippi, Ginny, Patty, Lynnwood and Beth!! Bare in mind that this fellow is over 60 for sure . . . but he said new info keeps confirming that the labs are just not as dependable as they once thought. He practices with the Cleveland Clinic at a satallite facility about 20 minutes from my home (nearer than the main campus in Cleveland). I have been w/o a rheumy for almost a year, because the others nearby have been eliminated from my game-plan for one reason or another. Maybe not fare to them, but I had another un-dx'd friend complain about the woman rheumy who dismissed her symptoms (this doc was recommended by two of my other docs!). I just kept waiting and talking to people till I came up with this name because someone's doctor told her he was Marcus Welby. Taaaa daaaa!!! But meanwhile I went all through the summer with some pretty painful issues and no rheymy!! I feel its worth it now because I have a promising feeling about this one. Lynwood . . . I am so nervous WITH you about your upcoming appointment. I can't wait for the scoop!! Thanks again!! I feel lighter than air, until my feet hit the floor like a ton of bricks!! Blessings!

Rosie, fantastic! I am soooo happy for you! Let's hope that Lynnwood is as fortunate!

Rosie, Sounds really good. My endo needs to take some lessons from him! I like older docs, they know what its like to be sick and how darn crappy you can really feel and still be up and walking. That is so great!

Hi, Rosie. WooHooo!!! That is exactly how I felt after seeing my new rheumy for the first time! FINALLY, someone who would listen! It does make such a difference just to feel like you're not wasting your breath and they really do care! Good luck with your test results giving him enough info. to be able to point to a definite dx. That will only put the icing on the cake for you! Good luck to Lynnwood too, I hope she has the same experience with her new rheumy! Take care and keep us updated!

Hi, Rosie. Just this past Thursday was actually my 6th appt. with my new rheumy. He is just a really good listener and I never feel rushed in my appts now. The blood work your rheumy is doing sounds good. My rheumy does mine more frequently than the others did, so we can see what is causing what...hopefully. I used to feel SO stressed before, during, and after my appts. I would literally get sick to my stomach. Because I have reacted to so many meds previously, right now we are just working to get me down to the lowest possible dose on the prednisone. I will be working for the next 2 weeks on tapering to 7mg every other day...then go to it everyday if possible. As I've posted about many times, I actually found the problem with my blood sugar myself as my previous rheumy's were saying I just had in-grown toenails. Now that I've got a rheumy who will listen to me and my PCP is working with me too; I'm controlling my blood sugar and so far not having too many problems tapering. It seems a good deal of what stopped me before was coming from my blood sugar being out of control and it being passed off as "just a little high because of the prednisone". I did experience some pain in the center of my chest during the first couple of weeks when going to 8mg everyday, so I will be watching for that to rear its' ugly head. I waited it out though. I have spoken with members of my local support group who've dealt with pleurisy pains and they said that was normal. It ended up just being a "mimic". It hasn't happened again after those first 2 weeks. My rheumy suspects with my lung involvement, I may not be able to get completely off of the prenisone but hopefully be able to go lower. He just reminded me if any new symptoms appeared or I started feeling worse, to contact him. I can even e-mail this one! It sounds like you've found one who will work with you too now. I wish you the best of luck,

Hi, Rosie. Just checking back after the holiday. I meant to say I am trying to taper to 7mg every day. But to make the transition easier on my body, for the first two weeks I take 7mg one day, then 8mg one day; alternating the two. Does that make sense? On the 30th, I will try to go on to taking 7mg everyday. Keep your fingers crossed! Let us know when you have your follow-up with your new rheumy. I'm so happy for you. Take care,