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mdawncooper
04-05-2011, 06:04 PM
I just posted on the newbie link but I would like to list my symptoms and get some feedback. I am anxious to see a new rheumatologist but I am not sure where to start with her. My symptoms include: Joint pain (ankles, hips, knees, shoulder) low grade fever off and on, sickness over half the time, dry eye occasionally, lots of bruising, two unexplained rashes, fever blisters, extreme fatigue even with a good night of sleep, general lack of not feeling well. I have had hair loss now for approximately six months and vitamin supplements have not helped.

I did an online Lupus Quiz and scored 88%. All the comments you want to make will be so appreciated. I am just looking for answers.

rob
04-05-2011, 06:30 PM
I just posted on the newbie link but I would like to list my symptoms and get some feedback. I am anxious to see a new rheumatologist but I am not sure where to start with her. My symptoms include: Joint pain (ankles, hips, knees, shoulder) low grade fever off and on, sickness over half the time, dry eye occasionally, lots of bruising, two unexplained rashes, fever blisters, extreme fatigue even with a good night of sleep, general lack of not feeling well. I have had hair loss now for approximately six months and vitamin supplements have not helped.

I did an online Lupus Quiz and scored 88%. All the comments you want to make will be so appreciated. I am just looking for answers.

Hi Mdawn,

Welcome to WHL. I just finished reading your other post, and then I saw this one, so I figured I'd respond here. You mentioned that your ANA results were positive, and then later back in the normal range. The results of an ANA test are a variable that can constantly change, so the fact that you were positive, but now are back in the normal range, means nothing as far ruling out Lupus as the cause of your symptoms. Although around 90-95% of people diagnosed with Lupus do have a postitive result on the ANA test, the absence of a positive result does not rule out Lupus. You can have normal ANA results and still have the disease.

In regards to your symptoms, they sound just like mine-I was diagnosed with SLE in 2004. I have every one of those symptoms, and a few others on top of it. I don't think your first Rheumotologist has even a basic grasp of the disease, or of the diagnostic criteria. This is unfortunately something we hear about on a daily basis here. Now, I am no Dr. or Rheumo, so this is just my personal opinion based on what you have said so far. With your ANA result, and the symptoms you are having, in my opinion you do meet the diagnostic criteria.

If you take a look at the top of each forum here, you will find FAQ's called "stickys". Included in these stickys is the list of diagnostic criteria. I would write down your symptoms and previous positive ANA result, and compare them to the diagnostic criteria list. I would then take the criteria list, and your list of symptoms to the new Rheumo. Hopefully the new Rheumo will be open minded and will help you find the answers that you need. I really hope that you don't have Lupus, but something is going on with your health, and you need to have answers so you can treat the problem and get on with your life.

I hope we can help you find the answers you need,

Rob

ETA-Here's a quick link to get you to the Diagnosic Criteria list-

http://forum.wehavelupus.com/showthread.php?2592-Criteria-for-Lupus-Diagnosis

pisces_music_girl
04-05-2011, 10:15 PM
Hey mdawncooper,

I am right in the same boat as you. I am in that lovely, lovely mess of multiple doctors and all sorts of fun tests. Through all my researching, yes, it does sound like there is something autoimmune going on. I'm not a doctor (actually a musician), but I agree with rob: keep a list of all your symptoms. I actually break mine down into "everyday", "occasionaly", "sometimes" and "not yet". Update it frequently, and take it to every doctor. I recently had my dentist tell me that my symptoms sounded autoimmune!

Also, rob: thanks for letting me know about how the ANA results can change. Mine have been and it's very frustrating.

Hang in there mdawncooper!

tgal
04-05-2011, 10:37 PM
First let me welcome you to WHL! I found myself getting angry for you when I read how you were treated! So many of us have gone through what you went through! I have been there for several years just thinking "OMG I can't be old enough to feel like this"! I finally thought I was having a heart attack right before Thanksgiving in 2009. When I got there I unleashed these seemingly unrelated symptoms. "I can't remember anything. I hurt all over. My joints are killing me. I have all these weird rashes. I can't take deep breathes". On and on the list went. They hooked me up to an EKG machine once they saw that my BP was 268/150 or something crazy like that. They sent me to a cardiologist who ran every test in the book and said I was fine.

I then went to the GP (who was new because I never went to docs EXCEPT when my gallbladder went out 4 years previously. I actually believe that this was the start of the journey for me although I now remember one episode as a Teen). The GP listened and knew something was wrong. Talked me into going on some antidepressants, BP meds, heck there wre 6 meds when I walked out the door and I have been sitting here trying to remember them with no luck). When the test results came in I too had a positive ANA and was sent to a Rhuemy. I got there and he looked at me and said "classic lupus" started me on plaquenil and 5 mg steroids and drew blood. Wow, I had never thought of Lupus. I knew two people in my life that had Lupus. One died at a young age (in his 20s) and one had lived with it for about 30 years.

I came home and began to read up on Lupus. OMG he is right! I started on the meds and two weeks later when I went in about the meds he said "Your ANA is negative so you don't have SLE. You have SCLE which is the not bad kinds. Just affects skin and joints". OK, last week I had this thing that had all my symptoms and now I don't have it? I was SOOO confused! I was back to 0 and I spent more than a year trying to find someone that would actually pay attention to me. Even after I began having seizures (which the rhuemy said was NOT related to the Lupus) I still had no idea what was going on with me. Months and Months went by, I ended up losing my job because I had a seizure at work and I couldn't get the doctors to say I could go back to work, and STILL no one could tell me what was going on! They could say "not Lupus" but nothing else.

They were wrong. I found this wonderful forum with people that are so kind and understanding who made me figure out that I wasn't crazy (ok, maybe I am crazy but not abou the illness!). I am sick and the problem is that no one was looking at everything. I had a specialist of every kind an NO ONE would look at the big picture. I was told to stand up for myself. I was told that the doctors worked FOR me and if they wouldn't listen to me then I could FIRE them and get another! That information and just the fact that I found others like me gave me guts to be my own advocate. Without this place I am pretty sure I wouldn't have a diagnosis yet!

I can't tell you if you have SLE or not. I can tell you that your symptoms sound much like mine when no one would listen. I can also tell you that having a negative ANA after a Positive one means nothing. Our results change. They fluctuate depending on what is going on with our bodies at the time. As Rob told you, Lupus is not diagnosed by one set of tests. The diagnosis is made in a cumulative manner meaning that symptoms may be together or months/years apart and they are ALL looked at. Take a look at the sticky Rob told you about. It has great information.

I am really sorry if I rattled on here but I am having some major fog tonight but I felt I needed to answer this post. Once again, welcome to WHL. We are glad to have you as part of the family!

mdawncooper
04-06-2011, 06:53 AM
Thank you so much for your replies. I am so excited to here from people who understand. I am anxious to look at the stickies and start documenting.

Thanks!
mdawncooper

steve.b
04-06-2011, 06:58 AM
firstly to mari, THANK YOU for your comments.

to mdawncooper, when i read your symptoms, i also look at a mirror, and see myself.

i would like to add that there is 63 auto immune disorders. thay all have interlinking symptoms, you may not have lupus, but it appears to be auto immune related.

i would like to welcome you also.
hope you find answers soon.

as others have said.... you pay the bill . . . you can fire them.
find a doctor who will listen... then have him explain it to you, so you can understand !!!!!!!!!!!!!!!

SandyR
04-06-2011, 07:19 AM
I just posted on the newbie link but I would like to list my symptoms and get some feedback. I am anxious to see a new rheumatologist but I am not sure where to start with her. My symptoms include: Joint pain (ankles, hips, knees, shoulder) low grade fever off and on, sickness over half the time, dry eye occasionally, lots of bruising, two unexplained rashes, fever blisters, extreme fatigue even with a good night of sleep, general lack of not feeling well. I have had hair loss now for approximately six months and vitamin supplements have not helped.

I did an online Lupus Quiz and scored 88%. All the comments you want to make will be so appreciated. I am just looking for answers.


Welcome to WHL. So many of us are in diagnostic limbo with you. I often wish my doctors would come on this site to see that I am not as unique with no positive ANA as they would like to believe. It's a frustrating thing for many of us to do the diagnosis dance. Just remember, you aren't alone. I agree with Steve- you definitely sound like you have an AI issue but don't forget that there are 62 other AI diseases. I know that my symptoms overlap with 2 or 3 other diseases and it is possible yours do as well.

rob
04-06-2011, 07:44 AM
I agree with Steve- you definitely sound like you have an AI issue but don't forget that there are 62 other AI diseases. I know that my symptoms overlap with 2 or 3 other diseases and it is possible yours do as well.

Yes, this is an excellent point that I failed to mention in my previous post Mdawn. Sandy and Steve are correct. Lupus is but one of a myriad of autoimmune disorders, and many people have more than one disorder with overlapping symptoms.

Rob

tgal
04-06-2011, 10:03 AM
This thread started me thinking. We all spit out the "90 to 95% of Lupus patients are ANA positive but there are some that are ANA negative". How do we know that it is 90% or higher? That is what the doctors use but look at how many are here that are struggling with the same thing. Maybe it is higher then that but because they can't get a diagnosis they are never counted.

Just a random thought that went through my head

SandyR
04-06-2011, 01:01 PM
This thread started me thinking. We all spit out the "90 to 95% of Lupus patients are ANA positive but there are some that are ANA negative". How do we know that it is 90% or higher? That is what the doctors use but look at how many are here that are struggling with the same thing. Maybe it is higher then that but because they can't get a diagnosis they are never counted.

Just a random thought that went through my head

I think this thought is really dead on. If the doctors could think like this then so many more of us would be diagnosed.

pisces_music_girl
04-06-2011, 01:17 PM
I think this thought is really dead on. If the doctors could think like this then so many more of us would be diagnosed.

This is so, so true. I've been talking to my therapist about it (she had a mysterious illness for seven years and was just diagnosed in March, so she totally gets how I feel). She said to me, "Not everyone is a textbook case. Not everyone will present all the symptoms. Just because you don't have a negative or postive ANA doesn't mean you don't have lupus or anything else."

Just thought I'd share that.

mdawncooper
04-06-2011, 02:55 PM
I had no idea that there were that many auto immune diseases. I am anxious to start digging through them.

Unfortunately I know all too well how doctors blow things off as I have a daughter who just turned 20 and has had chronic daily migraines for 4 years. You will not believe what those doctors have told her and done.

mdawncooper

SandyR
04-07-2011, 07:09 AM
I had no idea that there were that many auto immune diseases. I am anxious to start digging through them.

Unfortunately I know all too well how doctors blow things off as I have a daughter who just turned 20 and has had chronic daily migraines for 4 years. You will not believe what those doctors have told her and done.

mdawncooper


Saysusie created a thread with a list of most of the AI diseases. It's a "sticky" which is one of the threads on the top of the forum page and I know it's in 2 places. Once of them is the New Members section and the 2nd one I can never remember where it is but it might be in this section.