My Rhemy Appointment is finally here ... what to say??

Hi All

My Rhemy appointment is finally here ... next Tuesay (9th October)

I have had a a few up and down weeks to be honest. The last couple of weeks I felt nearly normal, still some joint aches, but energy levels were good, then BAM!! this week, feeling rubbish again :o( no energy at all, aching all over but worse in my hands and feet, significant hair loss, mouth sores, sores on eyelids, lumps on my head and behind my ears, headaches, memory loss and constantly dropping things (clumsy is not the word!) ..... the list is endless ...

I had a ANA blood test last month that came back negative, and I am worried the rhymatologist will just say there is nothing wrong and send me on my way ... I need some answers from him, if he tells me this is normal .. I think I will just give up, because no person should ever feel this and be called normal.

I want a magic pill that will make it go away, and get the old me back !

Rant over! :o)

Sue x

4 Replies

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  • I know what you mean, you will also feel guilty for wasting his time, I'll bet. But, my suggestions are to (a) make a list with all the symptoms of the last mont, I.e. the good and bad, and (b) a list of questions for him, such as could this be a flare, should I increase dosage of existing meds or perhaps switch to others more appropriate, how quickly would those have effect, why are the blood results negative if I am feeling so ill, what should I do another test now that I am feeling so ill, what if the symptoms aggravate, what do I do then, etc. And for each response write it down with him there in your little book, so that you have a record of what is said and he knows you now understand. Don't be tempted to just get a good response to the first question and then forget about the rest, you will regret it once you get home, so stick to the script. Good luck!

  • I meant to also say that ultimately his duty is to make you feel better, it is irrelevant if the symptoms are normal to lupus or to him, they are making your life a misery so he has to find a way to help. Don't get out of that door without next steps designed to improve. But at the same time don't get fobbed off with a fancy new pill that will cost a fortune but has no bearing on what your experiencing, try to use your judgment too.

  • Hi,

    I feel really frustrated for you - I have had really bad experiences at the hospital. I have positive ANA & am Ro positive too... And they really don't take how I'm feeling seriously - some to the point of being just plain rude.

    Interestingly I have lumps behind my ears too!!??? and often a sore scratchy throat and my memory is worse than useless...

    Are you able to take someone with you, that is a bit more forthright??

    Best of luck.

  • I have just come back from my 1st Rhemy appointment and been told that because my ANA results come back clear, that he thinks I have Fibromyalgia, which to be honest I am pleased about, I don't want Lupus, but I wanted a reason for feeling so crap, he also said that although he thinks it is Fibromylgia, I still had further blood tests and xrays of my feet and hands, to definately rule out Lupus.

    I am still on a good run at the moment and told him this, this morning.

    Will see what the other blood test come back with ..... x

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