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mtngirl

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Hi all.

Many of you have supported me for this past year and followed my story and I am, can't believe it, finally diagnosed after being in limbo for about 10 months. I saw a rhuemy today in Denver who said "Well, you have lupus. No doubt about it." As many of you know, I just returned from Mayo with no real answers and I was just following up with the rhuemy I saw prior to going. Anyway, he said that with everything else ruled out and my ANA and anti-DNA antibodies getting higher each time I've been tested that he was confident in the diagnosis. He said "you're not crazy but you have a crazy disease." The jury is still out on that one, ha ha.

I feel confident in the diagnosis and I've been put on immuno-suppresive drugs and prednisone to try to kick it into remission.

Just want to thank everyone from the bottom of my heart for the support...this forum kept me going. And to anyone presenting with breathing issues...I would strongly recommend seeing a rheumy or at least have docs run in-depth autoimmune blood work.

I was POSITIVE that I had ALS when this started. I hope that this gives others hope that there truly are so many things that mimic it you can't ever be sure. Be patient and don't give up hope.

I hope it's okay for me to pop in every once in awhile. I thought about looking for a lupus forum but it feels like cheating, ha ha.

God Bless,

Tracy
 

Zaphoon

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Tracy,

I'm glad to hear you finally reached a diagnosis, glad its not ALS but still sorry you have to deal with Lupus. You have been good company. I hope to see some posts from you in the future!

Zaphoon
 

lovelily

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Hello Tracy....Sorry you have Lupus, but at least now you know you are not crazy! I hope the docs can get the disease into remission for you. Hoping for the best for your future! :)
 

rose

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Tracy,

I an so happy for you! Now you just have to get the Lupus under control. I remember you posting that your ANA's were elevated, and that they continued to climb is even a stronger sign of it being Lupus.

Really, although no one wants to have Lupus, this at least is treatable. It may take you a few weeks for you to notice any effect from the meds ~ or maybe not. :) If your rheumy didn't advise you to take prilosec OTC, please check with him about it. The prednisone is hard on the stomach..... Be really good about making sure you get enough rest too, (I know with your children this is not always easy).

Please come back and let us know how you get along! You definitely made my evening though, what a relief! (((hugs!))) :)
 

freddiesnetty

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well it is sure nice to get some good news once in awhile....

AMEN!

netty
 

sdsyd

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WOW! I am so glad that it isnt ALS or any other MND. I know two people with Lupus, one who manages well and is EXTREMELY careful with her diet and meds,etc..- even an accidentally spiked eggnog will flare hers. The other is my cousin and since it is SYSTEMIC, it has deifnately taken a toll on every major system in her body...but the good thing is that SHE does have periods of time where she rebounds. Hopefully yours will be very manageable once the right combination of things is found. I wish you well and I do hope you find a good Lupus forum.

Love,
Cindy
 

planningguy

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Tracy,

While Lupus certainly is no picnic, I am glad that you finally have a diagnosed, and that it is not MND. Its a nice piece of good news going into the holiday season.

Robert
 

brendapals

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Tracy,
I wish you all the best of health for many, many years. That's great that it's NOT ALS. I see a lot of lupus patients in the practice I work for, and yes, it is very manageable,
Keep the faith,
brenda
 

awieleba

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tracy~

I agree with all, lupus is no picnic but better then some alternatives. I know a few ladies with it and it is not great but they have a good life and enjoy thier famlies!

ps. I am getting some more test because I had a pos ana/speckled smooth pattern the one assoc. with lupus) but no pos anti A or B. I had a + sed rate too. but then came down. I also have a pos hla-b27-gentec marker for certain rheumy things. but rheumy has said my sx seem neuro....

i AM SOOOOOOOOOO HAPPY FOR YOU!

april
 

CB1977

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Tracy, I have read your posts but never replied. I am very happy for you that you do not have ALS! That is good news! Have a happy holiday season!

CB in Ohio
 

crystalkk

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Tracey,

That's great news, I hope you can get it into remission.
 

mtngirl

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:smile:Thanks everyone so much for the good wishes. This is, without a doubt, the best forum on the internet. I've checked out some lupus forums but have yet to post.

I hope everyone had a great Thanksgiving. I had to go off the Plaquenil for awhile as it was making me feel funky but I'll try to start it back up soon at a lower dose. I am tolerating the prednisone well but I know I can't be on that long term...it certainly does make me feel better though.

I will continue to pray for everyone on here and give thanks for the support that I have received here.

I'll keep checking in!

All the best,

Tracy

April -- when was the last time they checked your ANA? Mine was checked when my symptoms first began and it was negative. Then, checked again this fall and was elevated. I think it took awhile for it to show in my bloodwork. The real kicker for me was the elevated anti-DNA...rheumy said that it very specific to Lupus. I never had an elevated sed rate or c-reative protein. Could it be time for them to run another autoimmune panel on you? Just a thought!
 
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