Aa
Well, I guess I'm leaving
I haven't posted anything in a while, but I wanted to thank everyone for their help and consideration in the past. I appreciate you all listening to me. I also want to wish everyone luck in their Journey as well.
They finally discovered what was causing all my issues.. not MS... but Systemic Lupus (SLE)... The Great Imitator.
Its amazing how similar the symptoms can be, and just like some people experiences with MS, how difficult it can be to get a diagnosis (all the same Specialist issues too!).
With love and respect,
Mar
How in the world did u know to sunbathe before the test???????? Smart smart lady. The things they do not teach us in nursing school. Be strong. My mom has systemic Lupus she is nearing 70. Her longevity was exercise mild if course, Always remaining active and taking care of herself. My grandmother has discoid Lupus. She is 95. The pain is not always easy but they took care of themelves. Exercise and rest.
Good luck and God be with you
Good luck and God be with you
Hi MAr, I'm a bit late in joining the celebration here - we really do like it when our family here gets answers and even more so when they are vindicated. I'm so sorry you have Lupus, but it could always be something worse.
You are a smart woman and I just learned something from you - that tip about sunbathing is very useful for other people.
That's not a long rant at all - thanks for the explanation of how you got to this point.
Please do stop through and let us know how you are doing with the treatments.
be well,
Lulu
You are a smart woman and I just learned something from you - that tip about sunbathing is very useful for other people.
That's not a long rant at all - thanks for the explanation of how you got to this point.
Please do stop through and let us know how you are doing with the treatments.
be well,
Lulu
Thanks everyone.
As to how I'm feeling after the DX.... Vindicated!
I'd like to do the "I told-you-so dance" for all of my doctors that wanted me to go see a psychiatrist, and pushed anti-anxiety meds on me. And diagnosed with WWWS (Weak-Willed Whiny Women's Syndrome).. grrr.
Started my DMD yesterday (Plaquenil, a 50 year old anti-malarial drug that acts as a mild DMD for Lupus). I'm happy about that.
To anyone that's still trying to find an answer to their issue, and is stuck in Limboland. Don't give up on Lupus as being a possible cause too quickly, if its a possibility. I was told by three different doctors that I definitely did not have Lupus (then lectured, of course, as to why I wanted this disease). I was told that a negative ANA test "proves" you don't have Lupus.
Nuh uh. More things to be added to, "Lies My Doctor Told Me". Your ANA fluctuates, and you just have to be lucky to catch it at the right time(even in the middle of a bad Lupus flare, you can have a negative ANA test). Then there's the 2-3% that have ANA negative Lupus, who will never show positive.
Luckily I ran a forth test, on my own, and exposed myself to sunlight( people with Lupus are frequently sun sensitive) before the test. Bingo. Positive ANA, which caused them to run other tests. Positive anti-dsDNA, and positive anti-Sm.
Sorry for the long rant on Lupus and Doctors.
I'll probably drop by from time to time to see how everyone's doing.
Take care.
Mar
As to how I'm feeling after the DX.... Vindicated!
I'd like to do the "I told-you-so dance" for all of my doctors that wanted me to go see a psychiatrist, and pushed anti-anxiety meds on me. And diagnosed with WWWS (Weak-Willed Whiny Women's Syndrome).. grrr.
Started my DMD yesterday (Plaquenil, a 50 year old anti-malarial drug that acts as a mild DMD for Lupus). I'm happy about that.
To anyone that's still trying to find an answer to their issue, and is stuck in Limboland. Don't give up on Lupus as being a possible cause too quickly, if its a possibility. I was told by three different doctors that I definitely did not have Lupus (then lectured, of course, as to why I wanted this disease). I was told that a negative ANA test "proves" you don't have Lupus.
Nuh uh. More things to be added to, "Lies My Doctor Told Me". Your ANA fluctuates, and you just have to be lucky to catch it at the right time(even in the middle of a bad Lupus flare, you can have a negative ANA test). Then there's the 2-3% that have ANA negative Lupus, who will never show positive.
Luckily I ran a forth test, on my own, and exposed myself to sunlight( people with Lupus are frequently sun sensitive) before the test. Bingo. Positive ANA, which caused them to run other tests. Positive anti-dsDNA, and positive anti-Sm.
Sorry for the long rant on Lupus and Doctors.
I'll probably drop by from time to time to see how everyone's doing.
Take care.
Mar
Marisa, how wonderful you have been dx'd! Now that you know the enemy you can fight it.
As others have stated you're more than welcome to stick around if you wish!
Mike
As others have stated you're more than welcome to stick around if you wish!
Mike
Marisa,
YOu know we are a melting pot! One filled w/all the mimics, known and the unknown!
HOw are you feeling since your dx? ARe you looking for another support group? You know we have MOB rules around here and we'll hunt you down, ha/ah
What makes us so unique is our collective experiences and expertise. You never know when that one member joins that will need what you can give. So, we'd love for you to stay if you feel comfortable to do so.
Please do tell us your next steps, we'd love to hear about it and how you are feeling about all this.
I'll echo Sarah, and say, you could of just disappeared and we'd have no idea why you left, so thank you so very much for this post.
(((hugs)))
shell
YOu know we are a melting pot! One filled w/all the mimics, known and the unknown!
HOw are you feeling since your dx? ARe you looking for another support group? You know we have MOB rules around here and we'll hunt you down, ha/ah
What makes us so unique is our collective experiences and expertise. You never know when that one member joins that will need what you can give. So, we'd love for you to stay if you feel comfortable to do so.
Please do tell us your next steps, we'd love to hear about it and how you are feeling about all this.
I'll echo Sarah, and say, you could of just disappeared and we'd have no idea why you left, so thank you so very much for this post.
(((hugs)))
shell
Thanks for letting us know as you could have just disappeared without saying anything. Also sorry about your dx but at least you know what you are dealing with. Best of luck, stay strong, positive and hope that treatment helps.
Sarah x :)
Sarah x :)
So glad you were able to figure out what's going on! Now on to treatment and dealing with it.
Stephanie
Stephanie
I'm glad they've finally figured out what was wrong, and sorry to see you go! Take care of yourself, and don't feel like you have to leave just because you've been diagnosed with something else.
hi there.. so you have some answers, thats a good thing. Hope you have a treatment that will help you with this Dx. Sorry to hear you have it, but glad you have answers.
you don't have to leave us you know.. but I understand you might want to have a forum that is about Lupus. But stay in touch.. OK
take care
wobbly
you don't have to leave us you know.. but I understand you might want to have a forum that is about Lupus. But stay in touch.. OK
take care
wobbly
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