View Full Version : Help! Newly (un)diagnosed!
07-22-2008, 11:26 AM
My name is Bridget. Im 23 and I live in South Florida. I have been struggling with what I believe to be very early lupus for a while now. I have been through several doctors that have all been disappointing at best. Here's some info as to my clinical situation:
low grade fevers - 99.1-100.6 for the past two years
chronic lethargy - life long, even as a child which was blamed on depression
very sun sensitive
widespread achiness - muscle related, no joint pain
C-Reactive Protein elevated for past 9 months (as high as 24.8)
One negative ANA (when I was feeling fine)
One positive ANA - homogenous pattern 1:640 (when I felt AWFUL)
Another negative ANA (when I was feeling fine again)
facial rash - not the typical malar rash, involves entire lower face except bridge of nose
Susceptible to any and EVERY bug that I come in contact with
When I get sick, I'm sick for weeks (ie: ear infection turned into mastoiditis, cold turned into walking pneumonia.)
red patch on left ankle (has been there for probably a year)
tingly, cold raised patch on left shoulder that come and goes (especially in the sun)
recurrent/chronic mono infection
hair loss - many strands, but not in chunks
very dry eyes
very painful periods
chronic constipation/sensitive stomach
After referring MYSELF to a rheumatologist because my GP was useless, I had a whole battary of tests run. Unfortunately I was feeling absolutely fine at the time and all but the C-Reactive Protein came back normal. My ANA was negative, urine negative, chest x-ray clear, Double strand DNA negative. So basically I got no where. The Rheum says I probably have chronic fatigue syndrome related to mono and fibromyalgia. I don't feel like that is the right answer. I feel that something is being missed, or dismissed. Since I have poor health insurance right now, a lot of this will have to wait, but I'd appreciate any input from anyone out there. Help!
07-23-2008, 02:35 AM
Welcome to the forum. It sounds like you are having a bad time of it. Sometimes it takes a long time to get diagnosed as Lupus is a hard illness to diagnose. They call it the great imitator big time. It will mimic a lot of other illnesses and that is why the doctors state that you have to have meet at least 4 of the criteria of the 11 that they list to diagnose Lupus. The ANA pattern that you talk about is seen in Lupus, but they will not diagnose on that alone. I hope that you can get some answers and soon. There will be others that have a lot of information that may help you that will come on here. I am relatively new to the site, but not new to Lupus. I will be 50 in December and have had lupus most of my life, however I did not get diagnosed until I was 36 years old due to lousy doctors that would not listen to me until the situation got dire. In some poeple Lupus will develop very slowly and that was the case with me. I hope that you do not have to wait for years like I did. If I were you I would keep going to the Rheumatologist until they give me an answer one way or the other. Good Luck.
07-23-2008, 07:20 AM
You sound EXACTLY like I did years ago, with alot of symptoms, but no ANA. You CAN have lupus without a positive ANA, particularly if your ANA was once postitve. It is very rare, but it does exist.
The Dx process with lupus is VERY difficult because:
1) Lupus symptoms can also mimic other illness. Most doctors will rule everything else out first, before considering lupus.
2) Doctors usually do not look at the WHOLE picture - For example, you may have hair loss and swollen joints one year, the next year you may have pleurisy and fatigue, etc. The doctor is usually looking at what brought you there THAT DAY, and not whats been going on for a while. Lupus symptoms come and go, different ones at different times, so unless a doctor looks at EVERYTHING - a lupus Dx is not usually considered.
3) Most all doctors will not Dx without a positive ANA, and sometimes it has to be HIGH and consistently positive. So, ike you said, if you see a doctor and feel well, and your blood work is good that day, a Dx is unlikely.
4) Most doctors are not educated enough in autoimmune diseases, their pattern and presentations, and will chalk symptoms up to stress, hormones and even hypochondria.
I, like you, was sick for many many years. I had ALOT of specialists feel I had lupus, until they did the blood work, and then change their mind. This went on for 9 years. Finally, this year, a rheumie i had seen two years before, felt that I did fit into the "rare" Dx of seronegative lupus (neg. ANA). However, this does NOT happen often (the Dx, I mean, not the neg. ANA - I think there are SO MANY more out there with a neg ANA that have lupus)
In your post, you also say you have no joint pain. This is one of the hallmark symptoms of lupus, and no doctor Ive ever seen would even CONSIDER lupus without swollen joints. (For the 1st few years, my joint REALLY hurt, but were not swollen). It wasnt until they began to swell that they took me seriously. You CAN have lupus and no joint pain, but most docs dont know that. Because there is no ONE test, doctors have ALOT of discretion as to who gets Dxd and who doesnt. This is what is horrible about all of it - one doc could say yes, and another could say no. As a matter of fact, I hear often of people being UNdiagnosed, after their blood work comes back good (even though they have had treatment!!)
I hope I answered some of your questions. This topic really hits home for me...I have been sick (I mean SICK, in bed, unable to work) on and off (mostly on) for YEARS. If just ONE doctor back then took a chance, I could have been treated years ago.
I suggest you keep a journal everyday on how you feel. The next time you see a doctor for ANYTHING (cold, menstrual, etc) - bring up your symptoms, etc. The doctor needs to see your WHOLE picture - so get copies of all your medical records, blood work, etc.
Good luck, and in the meantime, take care of yourself - good nutritiion, lots of rest and stay out of the sun.
07-23-2008, 10:18 AM
Thank you for your reply Lauri and Kathy. It's good to hear that someone doesn't think I'm a hypochondriac. My only true evidence is that I did have one positive ANA (homogenous 1:640.) My fiance now believes that there is something truly going on, whereas before he was scolding me for being so critical and demanding of my doctors. As a medical professional, I have high standards for care of my patients and even higher expectations for my own care. Butit's a good thing Im an obnoxious patient because when I had my initial set of bloodwork drawn by a GP, they told me everything was within normal limits. However, when I requested my results straight from the lab, I found that my CRP was way off (she didnt read the third page!) This got me thinking and I had one of the doctors I work for write some other bloodwork because I was feeling sort of like I did when I had mono in 2004. Bingo.... very active mono. A month after the (+) mono test, I decided to check my levels again and add an ANAchoice just for the hell of it. I was shocked when the ANA came back positive and so was my doctor, because it was negative the first time (felt fine that day.) So with my doctor being useless and non-communicative, I referred myself to a rheum. She spent an hour with me and she actually TOUCHED me. It was great. She carefully touched and examined everything that I complained about. It's amazing what a difference touch can make when listening to a patient. I really felt as though she was ACTUALLY LISTENING! And she was. Unfortunately, I was feeling about 85% that day and my labs were all normal... except for the CRP which was high as usual. The day that I was supposed to go back to see her to discuss labs, I ended up quitting/being asked to leave my job. So I was in no mood to go to the doctor that day. And since then, I just havent had the energy, nor the desire to make another appointment. I recently bought some crappy health insurance that covers a few things.. mainly big stuff: hospitals, etc. If I go and have all that testing done again with the insurance I have now, I will be in debt (or should I say MORE debt.) I know I need to go, but you know how that is..... would love to, but I'm just so darn tired all the time. I went to the store the day before yesterday and spent 3 hours shopping for clothes (came out with two pairs of jeans in THREE HOURS.) Yesterday and today have been spent on the couch exhausted. One good day, two bad days. The story of my life. I think I'll take a nap.....
PS - if I don't get a dx in a timely manner, what will happen if it is indeed SLE?
07-23-2008, 10:36 AM
Hey Bridget...Welcoming you with open arms...
Is anyone treating your symptoms? If they suspect other things or without a diagnose that doesn't mean they can't treat your symptoms.
A positive ANA test by itself is not proof of lupus. There are many illnesses and conditions associated with a positive ANA, including rheumatoid arthritis, Sjogren's syndrome, scleroderma, and lupus, as well as infectious diseases such as mononucleosis, subacute bacterial endocarditis, and autoimmune thyroid and liver disease.
Certain medications can cause a positive ANA, and many healthy people with no associated illness or condition have a positive ANA. In fact, about 5% of the general population will have a positive ANA. Thus, at least 95% of the people who have a positive ANA do not have lupus! A positive ANA test can sometimes run in families, even if family members have no evidence of lupus.
The ANA is only a test and, like a high cholesterol value, a positive ANA doesn't necessarily equate to having a disease. A positive ANA is only an indicator which points in several possible directions, and indicates that further investigation and analysis may be needed.
Keep looking for your wellness..hugs,
07-23-2008, 12:04 PM
I have been told that many times and that's why I haven't been able to get anywhere. I've also read that mono and lupus may be inter-related, that is to say many people who have lupus also have mono. The relationship is apparently still uncertain, but there is certainly some type of relationship between the two according to studies that I've read. That is why this is so frustrating for me. I feel like I have lupus-like symptoms and that should be half the diagnosis right there. I know lupus is hard to diagnose and a lot of people go through a very long process to arrive at a final dx, but I'm concerned that waiting to start treatment (assuming it IS lupus) will allow the disease to start destroying my organs.
I know that I do not have rheumatoid arthritis because I do not have symptoms of this and xrays show to evidence of it. Sjogren's syndrome is unlikely as I have only moderate dryness of my eyes and mouth that is probably associated other medications that I take daily. Scleroderma is unlikely as well. Mononucleosis is a definite, but that can be present along side lupus. Subacute bacterial endocarditis - not sure but I'm pretty sure my heart is A-OK. Thyroid tests are all normal as well as liver function panel which rules out liver disease. So what I'm left with is mono, lupus, fibromyalgia, and chronic fatigue syndrome; all of which can exist together or seperately. So, you see my dilemma.
I also find it very hard to believe that nothing is wrong and I just happened to have a positive ANA test. Also, keep in mind that the positive ANA was drawn at the same time as a negative mono test. So mono was inactive at the time the ANA was positive, leading me to believe that they are not related.
07-23-2008, 12:32 PM
You don't have to have a diagnose to treat your symptoms..diagnosing is different then treating your symptoms. They can treat for Lupus without the diagnosis. Are you on Plaquenil? You could have incomplete Lupus...
I understand having a diagnose gives one a peace of mind...it did for all of us, for me. But having a diagnose should not be you validation of your emotions that something is wrong. Clearly there is. Never doubt your body and never seek validation for your illness, symptoms through anyone other than a doctor.
Lab tests are not the only tool to diagnose a disease....If your current doctor does not understand that, and does not go by past labs, past symptoms then I would seek out another doctor. Lupus is an accumulative disease, not having all symptoms or all positive tests at once.
You seem knowledgeable in the disease already, so you are aware of the 4 of 11 criteria..that is probably the reason for no diagnose. You have common symptoms of Lupus, but not the criteria.
I would suggest that you discuss a trial of medications with your doctor is the best advice I can give you Bridget and as new symptoms appear keep them abreast of it....
Hope this helps..
Keep looking for your wellness..hugs,
07-23-2008, 02:16 PM
I just wanted to add my welcome to those you've already received. I cannot give you any better advice than what you've gotten. Stay pro-active with your doctors and keep track of your symptoms so that you can help your doctors in treating you.
Welcome to our family where, as you've seen, everyone is helpful, concerned and supportive.
Peace and Blessings