My First Rheumy Appt: Is this Friday...and I must... - LUPUS UK

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My First Rheumy Appt

Ratana21 profile image
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Is this Friday...and I must say its been a battle with my dr just to get this referral. Actually it tookme 2 yrs and I had to switch drs just to get this referral. I pray the rheumatologist will be helpful. I've read all the horror stories of how long we wait for our rheumy appt only to leave with no answers. I have my pictures of the swelling and rashes to show the dr. I have my symptoms written down. My lab work are ready to be shown. My lupus symptoms checklist that I found from a post in this forum. What else do you guys recommend just to make things go well. Thank you guys in advance!!!

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Ratana21
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I would advise you to keep an open mind re possible diagnosis -but equally not let them fob you off in case they try to. If you come across as calm and good at listening then this will help you get a diagnosis. I'm a bit prone to gabbling - especially if my expectations are very high and I've waited a long time for the appointment so it's great that you are well prepared. But I've felt fobbed off a couple of times with "let's just wait and see where this goes" or been told by a neurologist that I was "overthinking". Perhaps these doctors were right because some of the antirheumatic drugs are very powerful and potentially harmful so waiting to see how yours develops isn't always a bad thing if it isn't aggressive or erosive.

They will probably want to run a whole battery of specialist tests - mostly blood tests but possibly scans or X-Ray's before diagnosing. You may find your list really helpful but equally it may not feel like a great plan to launch straight in with a long list. It depends on the individual doctor and the time constraints they are under. So keep the list in your head or in your handbag to refer to if they don't seem very amenable to this approach.

So I would say that it's best not to expect too much as that way you won't feel too gutted if no conclusions or diagnosis or treatment options are forthcoming from this long awaited consultation.

I've had some pretty awful drug reactions though in my five years under rheumatology - so I've learned that I need the consultant to work things out for themselves rather than have me suggest things to them and then end up feeling that somehow I'm responsible when things later go wrong. So much of it depends on the personality and skills of the individual rheumatologist. Remember that you have a right to a second opinion if you don't get on with or agree with this consultant.

Best of luck and let us know how you get on.

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