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Couldnt wait so I called the Rheumy secretary who was wonderful and very very helpful. She typed the letter out last night and read it to me.

There are three unusual auto immune disorders he is searching for all have eyeproblems, skin lumps, severe joint pains and limited mobility and show initially as RA!!!

I wont worry with the names and "labels "till they are proved one way or another, but i am seeing a plastic surgeon soon to assess my hands ( yeah!!!) and sort out biopsy if they still think its needed.

I can now relax as I realisze he is taking me seriously and I am so settled now. Just so glad i called his secretary as for the first time the hospital helpline let me down.

Love A xx :)

11 Replies

Hi A, Great News for you that will cheer up no end and you can look forward to the Festive Period, Lets hope they get on your case early in the year, Matt


Thank you Matt xx


Hi Allanah

So pleased you were able to speak to the secretary and get an understanding of what's happening, so that you can feel more relaxed over Christmas. Thank you for taking the time to come on here and update everyone, as I'm sure there are a lot of people who have been thinking of you.

Have a lovely time with your family.


(NRAS Helpline)


Thanks for all your help Victoria- and have a merry Christmas x


At least you've started the road to finding out what you have Allanah. Wishing you a good Christmas and New Year.

Kath xx


Hi it's the not knowing which unsettles us. Please you heard something to put your mind at rest a little....hope you have a lovely Christmas with your family... sending you a merry Christmas hug tc Nicola x


I'm glad they are (finally) getting things sorted out.


Thanks all xx


So pleased you got some answers and are feeling better about it all.

Take care,

Dotty xx


Thanks, once I get the biopsy I will feel better!


Hi Allanah,

Sorry, I didn't log on at all yesterday so didn't pick up your news.

I'm so glad you rang the secretary. I felt awful for you having to carry around that bombshell without any clarification from anyone.

Thank goodness someone is now listening to you and searching for answers to your condition. I do hope they are able to diagnose and treat soon.

Have a great and relaxed Christmas now.

Judy xxx


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