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kathyp
09-26-2005, 06:41 PM
Hi,

My name is Kathy. I've been having symptoms for about 6 years now, joint pain, muscle aches, mouth sores, headaches (would be my worst), fatigue, irritability, etc, etc.

I went to a rheumatologist about 3 years ago now, she said I had Chronic Epstein Barr, tested positive for that, also my ANA was weakly positive which she said could be from the virus. She followed me for about 6-8 months as my symptoms worsened, and finally put me on Plaquenil. I've been on it for about 2 years now. Unfortunately she left the area about a year ago. My symptoms improved and I'm doing okay on the Plaquenil and Anaprox.

Saw a new Rheumie last week and he said I have a mild form of Lupus, which I suspected, as new and unusual symptoms keep popping up. He drew all kinds of labs. All the Lupus specific ones came back negative, and I got a note from him saying that I appear to be in remission. But, I'm still having symptoms, still on the Plaquenil and Anaprox. In fact in the last week I've had some of the worst headaches I've had in a while, and when those are bad all else worsens too.

I read below about how you can have symptoms and negative blood tests. It's just aggravating to finally get the diagnosis, not that I really wanted it but I was tired of being in limbo, and then to hear that it's in remission. Which is good, but I would consider remission to be no symptoms and no meds also. It was like here's your diagnosis, now I'm taking it back.


Thanks for listening. I hope to make some new friends here. I'm a mother of 3, married, and I work full time (which is getting to be a drain).

:D Kathy

hippimom2
09-28-2005, 03:52 PM
Welcome Kathy and I'm glad you found us. I agree that being in limbo is terrible. I'm still somewhat in limbo. My doc is treating me for lupus but hasn't given the "official" diagnosis. I don't understand the whole remission thing yet. I would agree with you that remission would be when you have very mild symptoms or no symptoms at all.

I'm also a mother (of two) and work part time. Sometimes I wonder how long I can keep it up. Take care and I'm glad you are here.

SoleSinger
09-28-2005, 05:46 PM
I asked my doctor what her definition of "remission" was and basically, she told me that it was when your C3 and C4 were at normal levels... Whatever THAT'S supposed to mean. But, she said that some people still need to be on meds and some people wind up getting off of them completely when they are in remission. And some people still have symptoms and some don't... How specific, huh? That has been one of the most frustrating things about this disease, to me... There really aren't any clear cut answers as it affects everone so differently... Hope you feel better soon!

kathyp
10-01-2005, 08:02 AM
Hippimom and Solesinger, thank you for the welcome.

Saysusie
10-01-2005, 08:16 AM
Hi Kathyp;
I just wanted to welcome you to our family. Solesinger's doctor was correct about remission - it can be just as diverse as lupus itself and each lupus patient in remission experiences it differently. My remission consists of still having symptoms of Lupus, but not the medications. I do not suffer debilitating flares, but I do have flares which are rather mild and controllable (in fact, I am in a flare right now). My flares feel sort of like a really bad flu - I ache all over, my muscles twitch, I am very-very tired, I get lupus migraines at least once a day and I can't stand to be in any kind of sunlight.
However, I am not on any daily medication for my lupus and I deal with these symptoms individually. So, that is my remission - or so my internal medicine doctor and my rheumatologist keep telling me. Others may have completely different remission experiences.
It's very difficult to pin-point anything with lupus; everything about it is so different for each one of us!
Once again, welcome to our forum and to our family. I am sure that you will find friends here who are kind, understanding, comforting and informative. We are glad that you are here
:lol:
Peace and Blessings
Saysusie

Mitch
10-03-2005, 04:07 PM
Hi kathyp! Welcome. So sorry to hear about your headaches! As a fellow sufferer, I sympathize with you. I was just wondering if your new rheumy tested you for Antiphospholipid Syndrome or Lupus Anticoagulant? The only reason I ask is that the main symptom is headache. (The nickname is 'sticky blood' and it increases your risk of blood clots, heartattack and stroke.) I have it, and pretty much the only treatment is aspirin therapy and/or blood thinners. I only mention it, because the more stuff that can be ruled out as a cause, the better. I never really understood 'remission' much either. I just know I have good days and bad days, not many of either in a row. Confusing to say the least! Good luck!

kathyp
10-05-2005, 05:10 PM
Saysusie, thank you for the welcome. Your flare symptoms sound much like mine. I'm on Plaquenil and Anaprox. When I get over-tired, stressed, or ill my symptoms worsen. That's probably pretty typical. I hate the headaches, it's very hard to function as a human being. The rest I could deal with if I didn't get the headaches.

Mitch, thanks for your welcome. I'm going to request copies of my labs because my rheumy didn't send all the results and none of the numbers, just positive or negative, and you appear to be in remission. I have read about Antiphosolipid syndrome, but not that a symptom was headaches. Thanks for the tip.

:D Kathy

Mitch
10-05-2005, 06:43 PM
Hi kathyp! You're right! If I remember correctly, you almost never read the "headache" stuff when reading about Antiphospholipid. But if you read about "Hughes Syndrome" (There is a Hughes Syndrome site), it talks in a bit more detail about it. Good idea to get copies of your results!

Mitch