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Were you shocked?

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Posted 1/31/2008 10:37 PM (GMT 0)
As you know, I have NO defo diagnosis for all my difficulties. I have raynauds and an almost defo sjogrens dx on the blotting paper test.
I have severe neuro probs, muscle wasting and use a wheelchair.
How many were shocked when they heard they had any of the AI illnesses or diseases mentioned on this this Lupus site and how did you absorb the shock.
What I worry most about is, complete disability - as I already have a twin with PD.
also a shortened life without a purpose as in creativity.
I panic badly ALOT!
I worry about going to London and being told that I have a myostitis prob or Lupus or similar + some other weird neuro probems for bonuses!!!
xAnn
Posted 1/31/2008 11:00 PM (GMT 0)
Many of the AI diseases can be treated. Treatment can make a HUGE difference in you life. Sounds like you already have complete disability so no need to worry about that. PD would be my biggest worry if I were you. I was literally dying before treatment. Now I may be on bedrest for the baby but I should have a completely normal lifespan and I can do stuff I enjoy and that gives me purpose. I wish you luck. I KNEW something was wrong with me so the dx was no shock. Even the added dxes weren't really a shock. Just know we will be here to support you.
Posted 1/31/2008 11:09 PM (GMT 0)
Ann, It was quite the opposite for many of us. It can be a relief to finally have a name for your problems and a target to aim at. The docs can make a good treatment plan too. You won't be any worse off if they "tell you" what it is. You will be able to study it and help yourself in small ways that add up. Deep breath . . . and try not to use your limited energy for worry (easier said than done . , but what a waste). Join in here with some of the other members topics and you'll pick up a really good attitude. I promise. Blessings!
Posted 2/1/2008 3:43 AM (GMT 0)
Ann,
I have to agree with AlwaysRosie. I first saw a doctor over 25 years ago for what I now know to be lupus! Finally getting the diagnosis was a great relief! I was already suffering from the symptoms, I just wanted a name for the problem.
Also, I am so sorry to report this, but my 28 year old son has been having more and more medical problems in the last year. Thanks to my history, his PCP went ahead and sent him to my rheumy. It appears he has psoriatic arthritis. The tests results are not back, yet, but the rheumy was fairly certain of the diagnosis. So, I am glad he doesn't have to suffer for years and years wondering what's going on. He's already started treatment and I'm praying he gets into a LONG remission (like 50 years). A mom can hope!
I hope you are feeling better. This is a very positive site - stay focused and stay positive (and vent if you need to!)
Posted 2/1/2008 5:13 AM (GMT 0)
Oh Fran, so sorry to hear about your son! Way hard to see our kids go thru this too!) Blessings!
Posted 2/1/2008 7:28 AM (GMT 0)
I am sorry too, Fran about your son! Friends and I had a great discuss about who fares better with serious illness, children V. adults, it is my hyposisis that kids do, for they are so resilient. adults do all the 'worrying'
Yes on the other score, knowing what is wrong, I am sure will relieve me too instead of all the panic etc, on practically a daily basis as to new symptoms appearing etc and what is this NOW!
Thanks for the encouragement and I will stay pos.
Fran, all the best to you and your son.
Ann
Posted 2/1/2008 1:46 PM (GMT 0)

The only thing that would shock me is if two of my doctors ever agreee on anything.

hugs

Posted 2/1/2008 2:59 PM (GMT 0)
Okie,
Thanks for making me laugh!
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