Excited and Scared...2 weeks to my first Rheumy appointment!

[YYC_ Mommy]

I am going to my first Rheumy appointment in 2 weeks. I am both excited and scared. I am excited to finally be seeing a rheumy with high hopes that I can be put on some sort of treatment and maybe start to feel better.

I am scared that because I have such high hopes for this appointment that I might come home let down. My doctor ran many tests and has of course forwarded them all to the Rheumy BUT I am thinking that he too might have some tests to run. I guess I am just mentally preparing myself in case the appointment is not as "magical" as I hope that it might be.

[Scottietottie]

Hi 

I think you are being realistic. I hope you find a rheumy that's a keeper and one who listens to you, empathises and tries to address your problems. There is no magic bullet though. Symptoms can be alleviated but we're stuck with SjS.

Good docs are worth a lot. I've certainly been to disappointing appointments though. Go physically prepared as well as mentally. Jot down the questions you would like to ask so you don't forget anything and go prepared with a 'potted' medical history and possibly a current symptoms diary.

good luck! Hope you find a keeper.

Take care Scottie 

[Joe S.]

Take someone with you to advocate for you.

[navydad]

write down your questions,, if you dont get a answer you understand,, make him repeat it,, dont leave till your satisfied,, remember,, YOU are paying him for his services,, and Joes right,, take a gang with you,,

[lynnmarie219]

Wishing you a good appt with a "keeper rheumy". They are out there...but sometimes we have to look at more than one doc to find one of them...hope you hit the jackpot on this first visit!


Good luck and let us know how it goes...being prepared as the others have already mentioned is the best way to go!

[beej]

Not sure why people on this forum are talking about keeper rheumatologists - didn't know that there are some that are not so good.  Is it because some are not experienced enough with sjogren's or that they just vary like any specialist vary?  I've been told in my area it will take 2-3 months to get into one because there are not enough for this large metro area.  So I will be looking forward to hearing how your first appointment goes.  I'll also search the topics to see what kind of questions I should be asking.  Had not thought ahead that far about how to be prepared to meet this kind of specialist.

[YYC_ Mommy]

Thanks guys for all the advise and input. I too hope that I have a keeper rheumy and if not I still have my original rheumy appointment with the other one for November 3rd!!! Sure hope that I don't have to use that one and that this rheumy will be great!

I have been keeping a list of all my symptoms for a few weeks. Mostly because I did not want to forget any of them. I never thought of writing down questions, so thanks navydad for that suggestion.

I wish that I could bring someone with me (does my 3 yr old count?) but just with the time of the appointment it won't work for my husband to be there with me as he will need to pick up my son at school. This appointment time was basically told to me so going forward I should be able to pick the appointment times that will allow me to bring my husband or another family member.

I am going into the appointment with my eyes wide open with my fingers crossed that he will be able to help me. I feel that I have been SO lucky with my family doctor so I hope that my "luck" continues.

Beej, I think why people are talking about "keeper" doctors is because as you said they just vary like any specialist. Some doctors are ready to listen to you and learn about Sjogren's and some it seems are not as willing. This is a great place and you will learn lots.

[eyeamdry]

YYC, good advice from all, but remember to try and pick two or three things you need to try and find out and deal with first.  My rheumy is great, but after the first couple of appointments, she tells you to pick out the two most important things you want to talk about today.  That way, both you and the doc are not totally brain-dead when you're done.  They only have so much time allotted.  I went to my daughter's dr with her the other day and she was rattling off stuff faster than her doc could write it down.

When I had my initial appt with my rheumy, she was very thorough and took a good 2-3 hours for my time..  Lucy

[irish]

Every doctor has a personality and a certain amount of intelligence and experience plus a style when it comes to dealing with the public. There are times when those of us with chronic illness are subjected to doctors who don't get it. We don't know why they "don't get it" but they are not wasting time and money on. I had a rheumy that I started out liking and in 1 1/2 years I had to quit seeing her as she told me I took too much of her time with my many complaints. She had helped diagnose me with the sjogrens so I was grateful for that.

However, within one month of seeing her for the last time I ended up in infectious disease with a very rare lung infection. Then in another year I ended up in immunologist office and diagnosed with myasthenia gravis and hashimotos. Turns out I had them for probably 40 years. Then I was also diagnosed with severely low t-cells. The reason for this long story is to let you know that if you have a doctor who doesn't take you seriously and you are still feeling terrible chances are there is more going on. Don't ever, ever feel guilty about going for a second opinion.

If you can't get anyone to refer you to another specialist and your insurance will pay without the referral then do investigating and find yourself another doc for that second opinion. We have to advocate for ourselves to see that we get the best care possible.

Please start a notebook with your doctors visits, blood work done and what you were told. There is a lot that can go on and it is hard to remember it all. Good luck. You could be very lucky and have a good rheumy and that wiould be just wonderful. Irish

[YYC_ Mommy]

Eyeamdry and Irish, thanks for the advice! I truly appreciate it all.

[Nans]

I wish you the best of luck with your rheumy.

After 4 months without one (mine left town and the only remaining rheumy in town is not taking new patients) I have finally gotten an appointment with one in a city about an hour's drive from here.  Hope he's a keeper!  Guess I'll find out on March 4th.