been to genetics clinic!

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been to genetics clinic!

Postby angel » Tue Jun 05, 2007 2:20 pm

Hello went to genetics clinic today. Lady doc very nice says I do not have a syndrome. Says she reckons if my next stop rhuemtology dosent come up with naything then I should stop looking for answers and ask for drugs etc to manage the swelling and pain. I am at my wits end Pat.
I need something to be done now, and if my mum's doc can't help me then I don't know what to do. I am really just so upset and frustrated. Nobody knoes how to help me -In a way I hope it is lupus so I can at least get some help.
Mld lady says she reckons it's rhuematic and not le. Just really uncomfortable again with fluid, esp in calf and ribcage.
Just want my life back.
angel
 
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Postby angel » Thu Jun 07, 2007 2:13 pm

hello just another bit of an update-my mum spoke to my le therapist today while I was at work, sand my mum asked her if she still thinks I have le and she said yes-I have pockets of it on my body, but she reckons I have rhuematic problems too.
angel
 
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Postby patoco » Thu Jun 07, 2007 7:15 pm

Hi Ya Angel :D

These guys are driving me bonkers with their answers. Did the genetics clinic do tests? On what basis are they telling you, you have no type of "syndrome?" And the LE therapist, what is she basing her "assumptions" on?

Hmmm...sounds like they haven't got a clue and don't have the integrity to admit it. :evil:

I wish so bad you could get down to see Dr. Mortimer and his clinic. :!: :!: :!:

I know how you must be feeling. I went through the same thing when I came down with lymphoma. Hereditary LE an secondary lymphoma....I might as well have been from outer space.

Keep us posted, there is an answer that will be found.

:arrow: Big hug to ya

Pat
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Postby angel » Fri Jun 08, 2007 2:47 pm

thanks Pat!
they are all driving me bonkers too.
Bit of good news today-lupus doc has written letter to my doc about what other blood tests I should have-my mum was speaking to the lupus doc about herself and asked whether the letter had been written).
I just think I have le as well as lupus, the more I read about lupus and le the more I think I have both going on at the same time.
The genetics lady said my disability has nothing today with my swellings, and my small bones and soft skin are within the normal range.
She also said the chance of passing on my dyspraxia to my child if I have one is under 10%-which I'm glad about-but she said I could go back to the clinic again for more tests in the future with my future partner.
I don't know what prof. Mortimer would say if I went back again from seeing him in January-the geneticist has basically poo-pood the syndrome theory, and has said rhuemtology is my last chance of help-GREAT! not.
Anyway, and so it goes on...
angel
 
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Location: Scotland

Postby JacquieC » Sat Jun 09, 2007 7:30 am

Angel,

My mother is 70 yrs old and has both lupus AND LE in both her legs....they did not find the lupus until about 6 yrs ago

Hang in there

JacquieC
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Postby angel » Sat Jun 09, 2007 5:11 pm

thanks JacquieC
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