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how do you tell u have lupus please help and read my story

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Old 10-19-2009, 04:44 AM   #1
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how do you tell u have lupus please help and read my story

5 nyears ago when i was pregnant a doctor came in and said you have lupus then turned around and said your one point away from having lupus which i still dont understand so if so one may answer that i would appreciate it . but i have the blood clotting syndrome that is associated with lupus

these are my symptons
plus im on an add medicine which has speed in it plus i take nuvigal which is also a speed medicine

fatigue all the time
my body aches from my shoulder to my back to my arms and finger tips down to my legs all the time
my doctor put me on lyrica but its not working

olease help me i dont understand are signs of lupus

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Old 10-19-2009, 07:47 AM   #2
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Re: how do you tell u have lupus please help and read my story

Hi, amg80, and welcome! I'm sorry you're feeling low. There are "sticky posts" = permanent info, at the top of the thread list, that will help you understand the symptoms of lupus are & how it's diagnosed. Dx is tricky, because the criteria include standard bloodwork, specialty bloodwork, constitutional symptoms, skin rashes, etc.---it's a real grab bag, for which patients meet some (not all).

To be Dx'ed with systemic lupus, patients typically must meet 4 or more of the criteria, which may happen over time, not all at once. The dr. who said five years ago that you were "one point away" may have been alluding to that. (But he could have explained much better!)

When you say "blood clotting syndrome that's associated with lupus", do you mean antiphospholipid syndrome? There's a "sticky" on that, too. I think it's seen both with lupus and "standalone". How was your clotting problem diagnosed, by special blood tests? Do you require medication for it?

Is your dr. a GP, a rheumatologist, or some other kind of specialist? Has he discussed the lupus criteria checklist items with you? Has he run the specialty bloodwork generally done when lupus is a possibility? Does he do repeat "standard" bloodwork? I'll stop here, to give you a chance to post more. I hope others chip in soon, too. Meanwhile, sending you best wishes! Please hang in there, OK? Sincerely, Vee

Old 10-19-2009, 08:52 AM   #3
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Re: how do you tell u have lupus please help and read my story

Hi amg80,

I was just diagnoised with Lupus this year, but suffered with symptons for many years. I have the muscle pain also and was told it is from fibromylgia associated with Lupus and was put on Cymbalta which has worked great for me. Many people will have different associated dieases that others wont as we are all different. I have been to Dermi, Rhumie and my GP. MY GP is the one working with me on all the symptons I have since my blood work is to good but I have been diagnoised with TLE and SLE. I highly suggest keep control of your situation ,asking all the questions to can when you see your doctor, keeping a log of your daily symptons etc incase something new comes along. This way you wont forget anything when you see the Doc. Keep us posted on things.


Old 10-20-2009, 03:47 PM   #4
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Re: how do you tell u have lupus please help and read my story

Hi Amg80, I have to join in to welcome you and suggest the sticky posts at the top of this section also. There is wonderful info there. If you do not see a Rheumatologist, please try to get in. There are so many of us that have had to go through several doctors to get a proper diagnosis. I know how helpless one can feel without a confident physician looking after your health. Please do not be discouraged as a lupus diagnosis can be tricky as there are several varieties and not everyone presents with the same symptoms. There are meds that can help. Please be patient as it may take some time to get the right treament for you.

Old 10-31-2009, 06:12 AM   #5
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Re: how do you tell u have lupus please help and read my story

Hey I just wanted to let you know that my best friend had the same blood clotting disorder while she was pg and her ana was positive. But it was all pregnancy induced. (at least that is what they told her) She has never had any issues since then.

I do agree with the others, to see a rheumie!!! So you can be certain!!

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