[Mystique]

Hi all,

I had my first rheumy app. on Monday but im not really sure what to make of it. I came out feeling like I hadnt really told my hiSTORY that I had planned out. I had kept a diary of symptoms but never even referred to it.

I think that I was very conscious of the fact that the rheumatologist was running very late, I was seen over an hour later than my actually appointment time.

I must admit he was very nice and seemed quite friendly. He examined me for any signs of imflammation but i know he would not of found any as I have joint pain without the swelling.

He asked all the right questions with regard to the signs and symptoms of Lupus but told me that having a positive ana is not enough to make a diagnosis.

I told him about the rash on my face and other symptoms that I had experienced.

He sent me for several blood tests which ones I am not sure of but he did mention one for thyroid. I was supposed to book a next appointment but when I went to reception there were no immediate appointments available even though she looked as far as November. I have to wait for an appointment to be sent to me but Doc. did say that if anything shows up in my blood works they would contact me.

Guess I was hoping for something a bit more immediate but unfortunately I still have to play the waiting game. Speaking of waiting, because my appointment ran so late I couldnt get the blood work done the same day. I went back to the hospital on Tuesday and it took nearly two hours of waiting to get the blood work done.:sad:

Anyway, i feel better for expressing myself..thanks

 

[doris999]

Aww Hun,
There's alot of us going through the same thing, don't these Dr's know how much pain we are in most of the time. (sign)
Hang in there it all takes time, some of us get there soon than later.
Just keep pushing, i know it's hard at times.
Hugs.

 

[KarolH]

Hi Mystique and welcome to the boards.

Many of us have waited a long time to finally get a diagnosis and for things to show up positive in our blood work. I can speak for myself here, I waited years and dealt with wrong diagnosis after wrong diagnosis until finally a clear picture started to show through.

A good doctor will take a look at the whole picture, not just blood work. With that said maybe you should seek a second opinion? At the same time the diagnosis of Lupus on paper can cause a whole other set of problems with insurance, life insurance, etc...so doctors for this reason and many others are not too quick to want to label a patient if they are not sure.

What is important is not the label that your given for your illness but the willingness of the doctor to get you on medicine and treat you just the same. I hope this makes sense, I am tired and feel like I am rambling on and on here.

Anyhoo, welcome again and join us in the chat room sometime. Sure hope to get to know you better.:wink2:

 

[Maia]

It's very typical to NOT get a diagnosis or treatment at the first appointment. It's also very typical for doctors to run quite late! Overall it does sound to me like a pretty good first appointment and I hope you will feel free to call the nurse or office to request a phone call regarding the outcome of the bloods drawn today. Wait 2-3 weeks and they should be back... at least that's what I would do as for me knowing is better than not knowing and waiting and wondering if they just forgot to call me!

Best wishes for a return appointment at least in December... and for feeling better someday sooner rather than later.

 

[cad]

Hi there,
I just wanted echo what Maia had said. That this sounds pretty normal and quite often I think docs do not want to give lots of info about what it could be untill bloods are back. If you think about if they started saying well it could be Lupus or vasculitis or scleroderma, people would come out feeling very overwhemled so I think at first appts they tend to just quietly take note and run the approprite bloods. The other thing is that in terms of pain and stuff I have found that this has been the role of my gp, he has prescribed my pain killers etc and my rheumy has had nothing to do with this so far. So I would go back to gp and let them know about the appt and see if they can help you be more comfortable whilst your waiting to go back.

Its quite normal to weight a couple of months to go back, I think this is sometimes that the docs want to leave gaps for changes to be assessed either worsening or improving. But I do think that of you really are struggling you need to see if you can be seen sooner by getting your gp to contact the rheumy or ringing the nurse or secretary yourself.

I hope thing get better for and the time passes quickly.

Good Luck

Take Care

Cassie

 

[Mystique]

Thanks all for ur words of wisdom, they did make me feel better for a while.

I received my follow-up appointment letter in the post today, i could not believe it when i saw that my appointment is not until the middle of January 2010. Thats 5 months away which is a long time of not knowing, therefore i am really hoping that something shows up in my blood tests and i get to see the rheumy much quicker.

All in all i have been having a good week with very little joint pain but who knows how long this will last.

 

[Lily]

Hi,

That's a long time to wait for a follow-up. Has he suggested your GP do periodic testing in the meantime? Sometimes that's how they work it, but if you get very ill between appt's they can organise an earlier one.

I'm wondering if the doc mentioned what time frame he wanted to see you in? Usually that's what happens (in an ideal world anyway ) and it's the secretary's job to try and make that happen. If he mentioned an earlier time and this is what you are stuck with I would hassle the secretary and explain that to her.

Hang in there :hug: and good luck with those results.

love
Lily

 

[debatat]

Hi, that is a long time for a follow up appt. You can get your blood results from your gp in the meantime. If you have any troublesome symptoms if you go to the gp they can bring your appt forward. Make sure you chase up the blood results as they can get lost in the system!!

Take care

Deb

 

[greenhaggis]

Hi,


I would before even seeing GP for results give your specialists sectretary a call! Tell them youve only just had first bloods taken and find it odd you have to wait 5 months for a follow-up/explanation of things! Perhaps they will be able to get specialist to explain things in person or even send you a letter!

Bascially take your health into your own hands and do the chasing!

Take care,

 

[KarolH]

I agree with Lesley, do your own chasing and don't wait. I am a firm believer that we have to be our own health care advocates. If not, we are just a number. Good luck and let us know how you get along.