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Copy of letter sent to my GP from rheumy

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Posted 1/1/2010 5:48 PM (GMT 0)
Hi everyone, I hope Christmas went well for you, and a very Happy New Year!!!

I had a letter which was about my appt on 27 Nov.  It states that my pain is not controlled with 15mg mtx and the tramadol, and that it may be because I child mind.  I hfave decided this cant be true, as I havent worked since 18 Dec and its still the same, I still have swollen ankles, knees, elbows and wrists as stated in the letter.  It also says I have a purpuric rash on shins which is non blanching (I didnt know what that meant so looked it up) seems to be vasculitis, can be caused by infection, or by lupus, which is being looked into.  I have also been diagnosed with Raynaud's and Sjogren's, which I wasnt even told at the appt.  At the end of the letter it just says that the mtx and tramadol to be continued, and review everything in March.

Where does this leave me?  Do they seem to think that if I give up work my symptoms will disappear?  I coudnt just stop, as two families rely on me, or they couldnt go to work.

I have an appt with my GP on 5 Jan, and will discuss this letter, but feel very let down by the clinic, as none of t his was said at the appt.  I am hooping the GP can give me an idea of what I can now expect, regarding added meds etc. or a change in meds.shakehead

Posted 1/2/2010 11:15 PM (GMT 0)
Hi Mariette,

I'm so sorry your feeling let down, and rightly so as you have so much information in the letter and by the sounds of it not discussed at the appointment.  Were you showed the letter during the conversation with your specialist?

I feel your frustration and I'm glad you have the appt with your GP on the 5th. As you said discuss it all at that appointment and see what they have to say.  Another thing is that, if your really not satisfied witht he Rheumy you saw maybe ask to be referred to another one, sometimes it takes people a little while to find the right one. May I suggest you right down all the things you want to ask and discuss in a note book and take it along with you, so you don't forget something.  Also I have found that having someone with me to write down the replies is sometimes a help as your so involved in what their saying you forget somethings. Just a thought and that way you will come out with your answers and hopefully a plan of what's going to happen next.

Don't let them get you in and out feeling rushed, be firm but not aggressive, this is your body and your pain.

This site is wonderful for getting feed back on questions, usually lots of people with views from all angles. Don't let this get you down, do some research on the internet with regards conditions confirmed in your letter and that way you will be more able to discuss them and how you go about resolving them.

Most of all, keep us informed, vent your frustration here and ask anything you want.

Take care and good luck on the 5th, thinking of you.

Peggywink

Posted 1/3/2010 12:04 AM (GMT 0)

Hi Mariette,

You have gotten some great advice already from peggy.

I too, cannot understand how the MTX isnt working for you because you are still working?? How do they figure that??

Hopefully your GP can put all things raised into perspective for you. I know I always like to see my GP after seeing my Gastro as she is more clued up on things than my Gastro.

Good luck on the 5th Jan and let us know how you went.

Jo

Posted 1/4/2010 9:48 PM (GMT 0)
Hope everything goes well on the 5th, Mariette, I hate specialists like this one who don't bother to communicate to you their thoughts and diagnosis as if you the patient are irrelevant! How rude is that?

I'd be wanting a second opinion too. Having said all that it can take 3 months for the meds to kick in and for you to feel any difference. The waiting game I call it, we're always waiting for meds to work. Such a bore.

Hang in there, vent anytime you want, we're right with you. Hopefully the GP will have some insight for you. Its so hard to find a good rheumy who you can trust and talk to, but you really need one. It's your body that you're putting in their care, you need to feel assured they care about you.

I'd be really annoyed too, best wishes for the 5th, golitho
Posted 1/6/2010 9:52 PM (GMT 0)
Mariette,
How did your appt. go?
Let us know if you can.
Jo
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