Found a rheumy! First appt. on the 14th!

[sapphirrasmagick]

I found a rheumatologist today and had Moo Face do the referral, and was able to get an appt. next week on the 14th at 3pm.
It's an hour drive to her clinic, but after the initial consultation she says she can see me at the hospital here in my town.
I'm quite nervous...they said on the phone it will likely be a 40 or 50 minute appointment and I've never had any doctor spend that long with me in my entire life.
I'm excited...I hope we can figure out what's wrong and she can help me fix it.
But I'm also afraid.
I've had such horrible experiences with doctors all my life...and I have this fear the rheumy is going to say that I do not have Lupus and then send me packing, and I'll be back to square one, and still feeling lousy.
I'm so used to nobody listening to me and being brushed off...

Well...anyway...I also found a new pcp, but I can't get in to see her for the initial consult until January.
I don't want the rheumy to send my results to my old pcp (Moo Face), but it doesn't seem logical to send them to a pcp I haven't met yet.
Can I just ask the rheumy to release the results to me, so I can give them to the new pcp in January?

Also...does anyone have any advice or suggestions or can tell me what to expect for a first rheumy visit?
I did read in another thread about making a list of symptoms, which I'm going to start working on tonight.
But is there anything else I can do to make sure I get everything across in a way she'll be receptive to?

Geeze, I'm nervous!
This is going to be a long week.
:p

[Joandublin]

Hi there:)

Boy you sure do move fast girl!:) Well done on all you have achieved in such a short space of time. I have complete confidence that you are a new 'you' with regard to doctors and things will not be the same from here on in. You got the courage to find a new PCP and the resources to get a rheumy in double quick time. Pat yourself on the back!:)

This rheumy is not going to 'dismiss' your symptoms (and even if she did you will find another one twice as quick!). Dont have too much expectations from your first appointment. It would be unheard of for anyone to be diagnosed at a first consultation so dont expect that to happen. What will most likely happen is that she will take a full symptom and medical history (so its good that you are writing this down). She will also ask questions about your family's medical history (also have this ready for her). She will then probably do a physical examination (nothing intrusive) and will probably be asking things like where you are in pain right now. She should also order a range of blood tests (get ready to fill a pile of little blood containers:) ) She will also likely ask you for a urine sample and possibly take your blood pressure reading. Thats about the basics as far as I can remember. She may do more but she should at least do that.

A few tips....Rheumys tend to play down their patients symptoms (until they are presented with the obvious) so dont be alarmed if she says things like, its probably nothing serious, blah blah blah. At my first appointment I came away feeling like an absolute fraud with no treatment and a follow up appointment six months later. However as soon as they saw my blood results they wrote out and got me back in pronto. The rest is history.

You are on the road to discovering what is wrong with you. If it is Lupus then it will emerge. If its something else then the rheumy is the best detective you can have.

While you are waiting on results and your follow up appointment, ask your rheumy about symptom relief if you need some. Also ask her how you can contact her if something flares up before your next appointment. Explain about your PCP 'gap'. It will be important for you to have someone to contact between now and January should something flare up.

I dont know whether you can get your results directly. It wouldnt happen here in Ireland but our health system is different than yours so maybe someone else can come along and advise on that one?

In the meantime
Take care and best of luck on the 14th. If you have any further questions, feel absolutely free to ask:)

Luv n stuff
Joan:rose:

[lin]

hi i'm not very good at following logn post, but want to say i hope all goes well for you


hugs lin xxx:)

[Maia]

At any specialist appt for me, they alwasy ask me if I want a copy of the doctor's notes/tests sent to me and I say yes. This way I get to see everything my PCP sees. So I think it is definitely possible to get them sent to you, and hopefully you can take them to the new PCP yourself in January. They don't NEED to send their notes to a PCP, they do it more out of courtesy from what I understand. I think in your situation, they should be fine with sending you the notes/results.

Congrats on getting an appt so fast! That's amazing. Have you heard good things about this rheumy? I have found that the best way to be taken "seriously" by a doctor is to be straight-forward and NOT emotional. Ask questions to show that you are informed, but if you imply a self diagnosis then that can be... bad. Best to ask questions...

As to what to expect, expect a weight/BP check. Expect questions about current and past symptoms/illnesses. A thorough exam looking for range of motion restrictions, and any sign of fluid or tenderness or redness in joints and some common "tender points". Then expect to give a LOT of blood, and a little urine ;) Results should be done within a few weeks, and the wait can seem like an eternity.

Before you get shooed out the door, be sure to ask about pain relief or symptom relief until a diagnosis is reached. Be open to all possibilities mentioned; at least enough to give it a try before reporting back that it doesn't work. For instance, light exercise, stretching, NSAIDS only, etc.

I hope you've found a good one. :P Best wishes!

[sapphirrasmagick]

Actually, my choices for a rheumy were pretty limited because there are only two who travel to my area and that's important to me.
(I don't drive, so my mom is going to have to take me to the initial appt. next week.)
One was a man and one a woman...I haven't actually heard anything good or bad about either of them, but with my past experiences, I feel like women tend to listen to me better and I thought a woman might be more understanding and sympathetic about Lupus than a man would be.
I know that sounds sort of sexist, but I think there are aspects of Lupus, like the rashes and hair loss and bloating that aside from being bad in themselves are also really hard on a woman's self-esteem. I think another woman would get that in a way that a man might not, but I could be full of it. :hehe:

Anyway, I really very much lucked out in getting an appt. so soon...I hope this is a good omen for how the actual appointment will be.

Oh dear...I figured on the blood-taking, and I'm dreading that...I have the worst veins. I've actually been told by several nurses that I'm the worst they've encountered, and the last time I had to have blood drawn it ended up taking an hour and I nearly had a panic attack.
Half an hour in, getting queasy, really feeling the needle, and seeing there are still 4 MORE tubes to fill. No fun.
At one point, they actually observed my blood being sucked OUT of the tube and back INTO my vein. They can never get it out of anywhere but the back of my hands, and once they couldn't get it there so they took it from the top of my foot. It's a huge ordeal and I end up being bruised and lumpy for a month afterwards.

Peeing in a cup...bummer. My bladder takes a cue from my veins and is very bashful. Stick a cup under there and it shrivels up.
I'll be in the can, waiting to pee for ages.
I hope they have magazines in there. :rotfl:

Joan, thanks for letting me know about your experience.
That helps me prepare myself mentally so I won't be too upset if I walk away and they've downplayed things and said it's nothing serious.
My mom will be hopping mad, though.
She's seen me suffer for 14 years now and is so angry with doctors saying it's nothing that if anyone downplays anything she's liable to go off.
Maybe I should ask her to wait outside.
:p

[trapped]

just wanted to say well done on finding a new one and to say i hope the appointment goes well.

i can relate to the veins thing - they have a really hard time finding one on me too so ur not alone!hugs.

take care
sam

[helloos]

Hi there.

Glad that you got this appointment and found a new gp, but yes, that is a long time for the gp visit.

If they tell you the appt will be that long - that is a good thing !

My appointment was about 1 1/2 hours with my rhemo. He did about a 20 minute interview with many questions, symptoms, etc. I had pics for him too to review. So if you have anything on film, bring it in. Also any records, hand carry in if you can. Your list of symtpoms is great, both past and present. Also a medical history of your families.

The rest of my appt. was a thorough examination from head to toe. Then he talked and showed me booklets etc. THen he ordered more blood work and urine.

I hope that this rhemo can help you. Good luck and keep the faith.

Don't leave there without a sense of what this doctor thinks and what he can do to help you.