heading towards diagnosis...: after being ill since... - LUPUS UK

LUPUS UK

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heading towards diagnosis...

scoobydoo1 profile image
7 Replies

after being ill since 1997 finaly getting towards a diagnosis. could not have got this far without good support from family and friends and huge thanks to this site. having people who are in the same position as you is very empowering, and we all bring a different view point to this horrible illness..

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scoobydoo1 profile image
scoobydoo1
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7 Replies
Purpletop profile image
Purpletop

So do you have any indication as to what it is you have? Hopefully something mild...

scoobydoo1 profile image
scoobydoo1

thanks purpletop, oppinion is that it is lupus but not 100% confirmed yet, need to wait to see rheumy in about 4 - 5 weeks, now having intermittent swallowing and speach difficulties, only last a few minutes each time so ? neuro input may be needed. on one hand relief as finally getting some answers, the other upset i may have this problem, but hey could be worse, still positive, still working, still living ( although vastly differently from before) :)

Purpletop profile image
Purpletop in reply to scoobydoo1

We push so hard for a diagnosis, then are elated when we get it, for many reasons and then reality kicks in and grief and sorrow hit us. Try to hold onto your positive outlook when the latter happens, it will help tremendously. And we will all be here to support, of course. Take care.

scoobydoo1 profile image
scoobydoo1

thanks purpletop, will carry on for as long as possible. thanks to the guys here on the site for the support.

brave profile image
brave

you sound very positive ,keep it up and glad you have answers ,take care ,brave

chrissiij profile image
chrissiij

Glad things are finally falling into place for you! I first saw a rheumy in 1999, as my dad has Rheumatoid Arthritis, but then I moved away and was made to feel like a hypochondirac for ages, before I had an odd skin biopsy result in 2009 and it's just snowballed since then. Nothing has ever been found in my blood stream, but I am now on all the right medications and am slowly beginning to feel better. As Purpletop said, we initially feel elated when we finally, FINALLY, get a diagnosis, but then reality bites. However, you will find a lot of support wherever you turn. Good luck!

pattismith profile image
pattismith

Wont bore you with my case history of not being diagnosed for years, but have learnt to come to terms with it now, and you sound , like me a determined person. Anything is bearable if you can stay positive and focused, l always try to remember that there is always somebody out there worse off than me and to be grateful for all the wonderful friends and family l have . I only learnt how to use a computer 4 weeks ago and how found all the helpful sites and support groups, they are an immense help, the best medicine of all - is being able to talk and share , Thanks to all involved. xxx

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