Frustrated and need advice!

[laurajohn]

My internist made an appt for me with a rheumy. The rheumy is supposed to be the best around.  The appt was made for me  back in late Nov/early Dec.  Of course there was a two month wait, but I was getting excited because my appt was for February 7 which is now just around the corner.  Last week I got a LETTER in the mail, not a phone call, from the rheumy asking me to call and reschedule because there had been a scheduling conflict.  I called the office and the receptionist told me that the first available new patient appt she has is MARCH 24!!!!!  I understand that the dr's are going to be out of the office the week of the 7th, but they cancelled on ME!  Shouldn't they work me in? It was their error?  I explained that I have been sick for a year and there are days I can't get out of bed.  I have four kids and I am getting worse!  I told her that I have waited two months already.  NOW WHAT?  Should I call my internist office and have them call??  I have no hope that anyone will ever figure my illness out.....

[anita]

My only advice (at the moment) is to ask to be put on a cancellation list.  And ask if you can call once or twice a week to check about cancellations.  If you are close by and can come at the last minute, make sure to include that when you talk to them.

A good rheumy is hard to come by.   You might want to wait it out if this guy has a good reputation.  Ask your GP for help with any pain in the meantime to get you through until March.

[laurajohn]

Thanks!  They did put me on a cancellation list, which they typically only do for existing patients.  The lady told me they don't have many cancellations---mostly people who just don't show up.  The dr's office is a little more than an hour away, so .....I hate to make an appt with a different doctor because so far no one can figure me out.  All my blood work and mri's have been normal.  My endo thinks Lyme (she said a rheumy needs to run that test), my OB thinks Sjogren's. So.....For either one you need a REALLY good rheumy who won't blow you off! 

[anita]

I have found that "cancellation lists" don't really work well unless you are an existing patient (and they know you) or you call a couple times a week to see if there are any cancellation.  That's why I suggested calling....and tell them you can come on a moments notice (if you can).  They will also need to have a slot allotting for a "new patient" which is typically longer.   

Someone will figure this out.  Sero-negative isn't the end of the world.  Many of us here (myself included) are like this and eventually you'll find someone who knows what to look for or treats clinically.

I really would not suffer until March.  Keep the appt (sounds like he's worth seeing) and talk to your GP about pain mgmt, etc to get through until March.  I know it seems like forever, but it will be here before you know it.  You could also ask that the rheumy look at your records and see if he wants any labs or tests done while you're waiting to see him.  That way you could get them done and discuss the results at the same visit in March.

[Bucky]

Laurajohn - first off, welcome to your new Sjoggie family.

Anita has some good advice.  Unfortunately, it takes months to get into to see a Rheumy for your first appointment.  A two month wait is pretty fast.  What I've seen on the forum and from my own experience, is the "norm" is usually a good three months or longer.  To someone who is hurting and waiting for some answers - this waiting months and months seems like an eternity. 

If you feel this Rheumy you are waiting to see is good - I would just wait it out until March when they rescheduled your new appointment.  Like Anita said, I would keep checking for any cancellations though if they could squeeze you in before then.  Also, check with your GP to see if he/she could give your anything to take the edge off your pain while you wait.

In the meantime, make sure and have your list of symptoms and questions ready for your appointment so you can make the most of your time there.  "Usually", for the first Rheumy appointment they allow an hour time slot.

Bucky

[eyeamdry]

My drs do this quite often.  I have a rheumy, a cancer doc and a GP for starters and the GP is the only one who would not normally cancel on me.  I've become accustomed to this occasionally and just go with the flow.  My docs are worth it.  Lucy

[Meld256]

Laurajohn,

I'm sure you're frustrated!
Sounds like others have given great advice.  It seems to be true, that if it's a good rhuematologist, it can take several months to get a first appt. I know that doesn't seem right, but it's the way it is...

Glad you're on a cancellation list now; that should really help. You probably won't have to wait till the end of March. I understand when you're in pain, every day seems like an eternity.
Bucky and Anita have great advice. Get your questions ready; make'em short and sweet and to the point. List ALL your symptoms, even tiny ones when you think of them. And also if they want any labs before your visit. My rhuemy will not even see me if I haven't had a new blood panel done in the previous couple of weeks.

Please keep hope. Someone will figure out what's happening with you and get you help. I know when we hurt it seems like it will never get better, but it certainly can with the right meds and treatment. Try checking with your internist in the meantime to see if there is something for pain that can help.
We're with ya, dear.

Melinda

[Patze]

Good luck Laura and I'll keep my fingers crossed that you'll get in to see the rheumy soon.


Patze

[carimeaway]

Ugh, so sorry that you're struggling. I'm a Mom too and long story short, this disease SUCKS! *hugz*

You've gotten some good advice so far. Welcome to our little Sjoggie family and feel free to vent all you'd like. Pm me anytime, being a Mom (of many, I have 5 myself) is hard enough as it is w/o having to deal w/ debilitating pain.

[quietdynamics]

Really sorry for your frustration.
I waited a few months for a Rheumy, made arrangements for someone to drive me and then they informed they do not take my insurance. I had of course given them the information at the first contact call.

My GP did my lyme test. I would ask since you have to wait anyway.
And while you are waiting, if you haven't already put all of your labs in order so that you can take them with you. The new Dr. will copy what he/she needs.

If your children are in school rest as best you can. And let the children help you. Delegate duties, they will feel helpful 
Tell them as helpers ...you will have a Friday night moviethon. and they each get to pick a movie. Put comforters on the floor and hopefully they will crash before you do...lol

[sis]

I would call the internist office who referred you.

They may be able to send a fax to your Doc. or call and let them know you need to be a priority.

Mu neurologist did this for me w/ the local rheumy.  It helped me get in more quickly than normal.

Then they canceled on me because of snow 2 weeks ago.

The regular gal at the desk gave me appointment  too far off.

I called my sister crying about it.
She told me to call them back and remind them that my Neuro had talked to the Rheumy personally about seeing me ASAP.

I called back. (why couldn't I think of that myself?)

The nurse, not the receptionist called back w/ and appointment 3 weeks out. She said I'd be at the top of the cancellation list.

Duke has canceled and rescheduled me 3 times.
I'm keeping my appointment w/them at the end of March.

I called them every week for about a month hoping to get a cancellation appointment but gave up when I got talked in to seeing the local Dr.

It is so frustrating.  My GP finally got me in w/ good PT and she is helping me in the meantime.
I'm also getting acupuncture. 

If I don't do yoga ever day my body is just dysfunctional.

I hope you get in soon and find some pain relief quickly.

[tired of it]

Thats insane,,, I love how they just dangle you around like a puppet,, heartless bunch, but its all a business ,,

[laurajohn]

Thank you guys!  All good advice!

I had to see my OB today for a follow up (she did some hormone testing, etc. -- all normal) and she actually offered to do the Lyme test for me.  She said she didn't mind at all--she is great.  Of course she wanted to look at my tongue again and she REALLY suspects Sjogren's.  When I get these results I will then decide my next course of action.  If it is positive she'll be able to contact the rheumy....If not, I will call my internist's office and have their nurse call the rheumy's office for me.  I've called twice and sent a letter and email.  I'm persistant if nothing else!