[betty1]

can someone please offer me some advice?
i have recently been to the doctors and when i explained about symptoms i have experienced ( severe fatige, aching joints, rash over my cheeks) she said i was ticking some of the boxes for lupus. I have also been anaemic for weeks, i had a blood test (well they actually took 10 syringes full) which have come back negative, she said that these results arent conclusive and left it at that.
I have now done some research and have found that teenage glandular fever, memstrual problems,night sweats,headaches, swollen neck glands,and raynaulds all of which i have experienced are also related to lupus.
am i to believe that i have to have several of these symptoms at the same time (including a positive blood test) to be diagnosed.
I have read that for many people it can take years until a blood test shows a positive result, why do doctors only go on that result
thanks for reading this and any advice would be so welcome

 

[Katharine]

Hello Betty and welcome

Not ALL doctors go only on blood test results, however for around 95-98% of lupus patients blood tests are quite conclusive and this does lead many rheumatologists to discount ANA negative patients.

An experienced lupus specialist will sometimes be able to give a diagnosis or start treatment even when things are less clear. It is also sometimes possible to get answers from a skin biopsy (I had one done on unaffected, unexposed skin) though, like bloods, it is not 100% as a negative result doesn't always mean the person doesn't have lupus.

I know all that sounds very complicated - it is - and that is the trouble with auto-immune diseases. We can sometimes get very annoyed at doctors but it's not always easy for them either (even if in some cases they need thumping for their attitude :lol.

Bye for now,
Katharine

 

[debatat]

Hi, Betty and welcome to the board. Lupus is a very difficult disease to diagnose. I would suggest that you keep a symptom diary of any symptoms you have on a day to day basis and photo any rashes etc you have. That way when you see your doc they have a clear picture of what they are dealing with.

Lupus is not a diagnosis to be taken lightly, so quite rightly docs are very cautious about 'labelling' patients with it.

I hope you get some answers.

Deb

 

[Pink Pearl]

As Katharine said, not ALL people with lupus have positive ana's. I fall into the neg ana group, never had a positive ana in 20+ years of diagnosed sle. Had the gp done further testing, and not thought that in order to be dx with sle, you had to have a positive ana, I would have been dx at least 10 years before. I am positive for ds dna, LE cell, acl, and a few others. BUT, not positive for ana. My rheumy has had 2 of us who have never formed pos ana's - myself and my first cousin. Another first cousin has had 3 of the 11, but not 4 yet. So, in my family, this is a genetic link to sle.
Only about 20% are genetically linked in families. But it never hurts to do a bit of family genetic sleuthing.

Look up the 11 symptoms that form a dx of sle. This is with OR without lab work, so if your doctor is holding all the eggs in the lab work basket, then they need to rethink this. You need 4 of the 11 to constitute a diagnosis of lupus. If the doctor discounts your knowledge of your symptoms, then look for another doctor.

We often recommend that people keep a symptom journal/diary. Take pictures and take them to the rheumy with you. Again, if the doctor is not interested that you have taken a proactive approach to helping figure all this out, kick him/her to the curb and go on the hunt for one who cares about what you are doing for yourself. I fired 3 rheumy's before I found one that I can work with and who cares about proactive care. I've been with this doctor for over 16 years.
Sally

 

[keebler]

Hi Betty and welcome.

Here is a link from the main page of this web site.

http://www.labtestsonline.org/understanding/analytes/t4/sample.html

There is lots of information on lupus there.

There are many members here that can share in your frustration of that long road to getting a diagnoses.

Have a look around the site and post questions.

Love,
Lyn

 

[betty1]

thank you all for the kind welcome and advice. i will keep a symptoms diary, i am off work at the moment with a back injury that happened at work so plenty of time to listen to what my body is telling me
thanks again you all seem like friends already

 

[KarolH]

Hi Betty and welcome to a great site.

It took years for me to get diagnosed correctly. I went from being told I had Chronic Fatigue Syndrome, to Fibromyalgia, to a Stroke that quickly changed to Multiple Sclerosis..........this lasted more then 3 years before my bloods started to show abnormal antibodies and a positive ANA, hence the diagnosis of Lupus or Mixed Connective Tissue Disease to be exact. It was a long, frustrating road.

You know your body best. Keep a daily journal, take pictures of rashes or swelling, etc... Sometimes it is good to have these things to take with you to a doctors appointment.

I am glad you found us here and hope you stick around and learn from a great group of people. I sure did, learned more here then from my own doctor.

Sorry your not feeling well but don't give up and find a good doctor that is willing to think outside the box and not just look at blood work results. Join us in the chat room sometime.:wink2: