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Thread: The worst Ive ever been...

  1. #1
    Join Date
    Jun 2008
    Quincy Ma
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    Default The worst Ive ever been...

    Hi to all -
    I joined this group a couple of months ago, and just re-registered as I couldnt remember user name. My name is Lauri and I have been Dx'd (??have I?) with SLE a couple of months ago. This Dx comes after years of being really ill - to the point of having to not work anymore, etc. Howver, I could not get an official Dx due to negative ANA tests. My CRP is always high, as well as my sed rate (ESR), am anemic, butterfly rash, swollen joints, CRAZY fatigue, pain, mouth sores, kidney and liver problems, seizures, etc. All of these have come at different times - sometimes together sometimes not - over the past 6-7 years or more. I have a realy long story (but pretty interesting), which I wont bore you with, but it all started after a viral infection in my lungs when I was 8 months pregnant which put me into resp failure and a coma. A survived (obviously) and starting appx 7-8 months later, weird symptoms started. I have seen so many specialists (I live in Boston, MA where some of the best docs in the world are), and all have said "Oh yeah, this sounds like lupus" then have changed their minds after the neg. ANA. The only doc who disregarded my neg ANA was my neurologist, who was of the belief that not everything shows up in blood, and he had me on Plaquenil for a shile. I no longer see him (another long story). Anyway, I read all of your posts alot, and I think this site is wonderful. I think its just great that you welcome people without an official Dx, or in limbo, as this is such an unfortunate part of this disease. In any case, after going into a HORRIBLE flareup o ver this winter, I saw a new doc (jsut a PCP), who examined me, listened to me, and said - "This is lupus" I said "I know but my ANA is always neg" She said "Not every lupus patient has a positive ANA" So, believe it or not, I was thrilled. Do I want this? Of course not. But after years of misDx or unDX - just knowing a professional believes me is a good feeling. But heres the rub: After that visit (she sent me home with Solumedrol pck, which helped at first, and then flare got WORSE), I got a letter in mail with my new test results on it saying "All tests neg, except ESR which was high"...Thats all it said. After years of this stuff, I dint call her back to tell her I was still sick, or actually getting MUCH worse, out of fear that she is going to say"Well, I changed my mind you dont have it". I think alot of you understand this fear. Since then (6 weeks ago), I have been in the worst flare ever: almost unable to even get out of bed,a nd for the 1st time - unable to be in the sun. As sick as Ive ever gotten, the sun did not bother me too much. It is absolutely making me sicker. My butterfly becomes beet red, and all I want to do is lay down. (OMG - Im sorry this is soo long!) Anyway, I go to see her again at 7PM tonight. My husband is coming with me to make sure I tell her everything. I just wanted to introduce myself and let soemone know what is going on with me. I really need support right now. I had to quit my job today as I am way too sick to work, and I have no idea when this flare up will subside. Im soo depressed too. I am so aorry this is so long, thank you all for listening and God Bless You all. lauri

  2. #2
    Join Date
    Sep 2006
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    Hi, Lauri. Your story is an interesting one, and much of it sounds soooo many here have similar stories. (Mine...a bit different.) Diagnosis seems to be one of the hardest aspects of any autoimmune disorder. Symptoms are so varied; they come and go; they are common to many diseases! Your PCP is right, of course...postive ANA is not necessary for a diagnosis of lupus. It's generally thought that only a small percentage of lupus patients have a negative ANA...but, it is definitely possible.

    I'm glad your husband is going with you to your next appointment. Having a supportive person there to help to tell the story is always good. I find if hard to talk about my symptoms sometimes - I always take a written sheet to make it easier.

    If you haven't already done so, it's a good idea to start tracking your symptoms. I'm not as good about that as I used to be, but I was religious about it at first and I think it helped my doctors understand what was happening to me.

    Please keep us posted on how you're doing, and welcome to the 'family!'

    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

  3. #3
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Nov 2001
    Victorville, California
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    Hi Lauri;
    I just wanted to ditto what Mnjodette said, start keeping a journal of your symptoms; when they feel worse, what was going on when they flared, how you are resting, what scenarios cause your symptoms to flare, etc.
    Your last doctor was absolutely correct! There are many Lupus patients who DO NOT have a positive ANA. A positive ANA is NOT an indicator of Lupus (there are many other diseases that have positive ANA), not does the absence of a positive ANA dismiss a dx of Lupus. There is a condition called "ANA Negative Lupus", so it does exist.
    I do hope that, with a knowing doctor, you can get some relief from your symptoms. May I suggest that you should never put off advising your doctor of your symptoms, especially if they get worse and/or if new ones appear. This only delays treatment which could cause you even further harm. Do not fear your doctors or fear their diagnosis..only fear what lack of treatment can do to you! Keep us posted.

    Peace and Blessings
    Look For The Good and Praise It!

  4. #4
    Join Date
    Feb 2008
    Nova Scotia, Canada
    Thanked 1 Time in 1 Post


    Hugs lauri I hope your appointment goes well. Let us know how you make out.

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