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Discussion Starter · #1 ·
Hi all,
I hpe everyone is well or atleast not too bad.
I have not been on for a while. I have recently had another flare which was absolutely awful. Went back on a short course of steroids and then had a terrible rebound from them.
I saw Professor mc Huch on 1st June at the Royal National Hospital for Rheuatic Diseases, I was very impressed as it was only a 3 week wait.

He was very good, I spent about an hour with him and he was very nice and took his time not arrogant or dismissive.

He has referred me to the dermy at the hospital to check my rash.

Unfrotunately following the steroids I was not at my worst which as a lot of you know is quite typical. He did say that it would be helpful to see me at my worst so to ring the hospital when I became bad and try to come up which I thought was really good.

I have since had my face flare right up from the sun although I have been very caucious, used a sun hat an factor 50 screen.

I think I have decided to ensure of I can that the rash is up when I see tghe dermy so that there is no possibility of it being misinterpreted and am hoping then if he can clearly see it raised up then he won't feel the need to start cutting into it!

I am concerned as I have tests done again and some more sensitive tests to detect anti dsdna which I did not have before, I have a test for the antibodies but am now am haveing 2 different ones which are slightly different aong with the normal lot of run of the mill, some more sensitive inflam markers and the anti ccp which is a more sensitive test for RA.

I am just worried now that things are going to change. I have just got used to the diagnosis I have and I certainly don't want one of SLE or Rhupus.

I know I just have to keep an open mind and try not to worry which I am but still its not nice having it hanging over me. Also the possibility that the ENA that got me the diagnosis could now be negative.

All that aside I would definately recommend a referral to the hospital for anyone within travelling distance who is looking for treatment. The hospital does really provide excellent services. And operates a daily telephone advice line run by the specialist nurse.

Take Care All.

Cassie :)
 

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Hi Cassie,

It sounds as if you had a very positive appointment for a change. I hope your dermy appointment goes as well.

I would assume the dermy would want to do a biopsy since so many rashes look similar to each other. In order to get the best treatment possible you need to start with the correct diagnosis.

Try not to worry about the blood tests. Worrying won't change the outcome and could be damaging to your health. Instead be happy about finding a facility that provides decent care.

Take care,
Lazylegs
 

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Discussion Starter · #4 ·
Hi Lazy legs,
thanks for your reply.
Yes I am determind not to spend the time worrying. Its just the uncertainty thats not nice. I know the time will go quickly anyway with everything else thats going on so will just wait and see. And yes I am very greatful to be being seen at such a good hospital and to have atleast been taken seriously, I am very aawre of some of the awful things people have to through before being diagnosed and feel very lucky to not have to deal with that on top of everything else.

Thanks and take care.

Karol, thanks so much for your reply, again yes I will try to worry and just keep going as I have before. I hope you are not too bad yourself, I know you have had so many ongoing issues to deal with. Thanks and take care.

Cassie :)
 

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The Other Illinois Tammy
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Cassie,
That is wonderful to know. I am glad that you had a good visit with the doctor. It seems that they are doing all they can for the moment and it will just take time yet again. It will do no good to tell you to stop worrying as that is just human nature lol. Try to distract yourself as often as possible.

Let us know how things go with the other doctor and yes do keep an open mind as a closed one helps no one. Feel well and I hope you are doing well also.
 
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