I was diagnosed with Lupus, I have every symptom almost. That was about 8 years ago, then I returned undiagnosed, they now say i have factor xll. When they said I had Lupus they brought in the top Doctor from the hospital to tell me. I also had been diagnosed with the factor xll long time before they said I had Lupus. I'm at a loss, they told me they don't know how to treat it back then. Today I noticed I have these red dots all over my stomach. The reason they say i dont have Lupus is because I don't have a rash on my face.
Someone please help me..
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Joejoesgma127
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as i understand it, factor xll (hagmans) deficiency in lupus plays a role in determining coagulation & inflammation pathways
the really important thing, i think, is that your doctors are investigating your case more thoroughly this time round and gaining significant insights which are helping them to help you now. hang in there!
i hope someone who knows more about factor Xll replies
What they have told you is not true. Lupus can lie dormant for upto 10 years. Theres a good chance thats why they say you've not got it. As for the red dots goto your doctor and make sure its not shingles. As lupus affects your immune system. You want to try stay as health as you can. Get a second opinion on your results. Take care
I have a similar experience in that my diagnosis keeps changing. I have the butterfly and many other symptoms of Discoid Lupus. I calm myself by reading on this website about others being confused at the reaction by various doctors. Be patient if you can, they are trying their best but I think there are so many varying symptoms for each patient. My journey started thru my constant shingle breakouts, so get that rash looked at ASAP and don't scratch! Aciclovar tablets get rid of it but you have to be quick. It has taken a year, but am now on medication that really helps my symptoms, so don't despair. Good luck and let us know how you get on. Cas70
Hi - I have been Hydroxychloroquine 200mg per day for the last 2 years - I was finally diagnosed with Sjogrens Syndrome plus Discoid Lupus. Let me know if you need other info as you are replying to a very old post.
Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.
There are 2 factors here: Factor XII and SLE.
(1) FACTOR XII (Hageman Factor) DEFICIENCY
Factor XII (FXII) deficiency, also called Hageman factor deficiency, was first identified in 1955 in John Hageman. Its incidence is estimated at 1 in a million. FXII deficiency is inherited in an autosomal recessive fashion, meaning both parents must carry the gene to pass it on to their children; it affects men and women equally. It is more common in Asians than other ethnic groups.
FXII interacts with the activation of FXI to FXIa to generate thrombin, a protein that converts fibrinogen to fibrin, which traps platelets and helps hold a clot in place.
Symptoms
Some people with FXII deficiency experience poor wound healing. However, most do not display bleeding manifestations, even after major surgery.
Testing
Since bleeding time is usually normal, diagnosis is made by a prolonged activated partial thromboplastin time (aPTT) test. A factor XII assay helps confirm the diagnosis.
I really do not understand what you mean. Are the doctors saying you do not have SLE and that the diagnosis was wrong 8 years ago? Even 8 years ago there IS treatment for lupus! Are you saying you do not have any symptoms or your blood tests are "normal" which happens to be the case for many lupus patients.
Are these doctors expert in lupus because if they are not, you need to see a lupus specialist if you are having symptoms. Even if you are without symptoms, you need to see a lupus specialist. As you are in the US, go to the website of the Lupus Foundation of America and find the nearest Chapter to where you live and then contact them and ask for adviceas to who you can see:
You should also go to see your PCP to examine these red dots on your abdomen. Shingles can occur, usually on a neurological pathway eg side of your waist or sometimes down along the eye. However, you describe them as red dots and these could be a number of things which cannot be diagnosed without seeing a doctor - so please see your doctor asap.
We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.
By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.
When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".
Sometimes we need to talk to people who understand and who are not family or friends.
With good wishes!
Ros
Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.
We I was diagnosed I was told that the rash on my face was a lupus rash, but I saw a dermatologist who said it was rosacias, because it effects my chin as well.
Rashes are EXTREMELY difficult to diagnose and unfortunately, there are few who are an expert in lupus. The "MALAR RASH" is specific to lupus - but can look like other rashes, such as "Rosacias"so I am very glad you saw a dermatologist.
The Malar (or butterfly rash) is recognisable because the rash over the cheeks, bridge of the nose avoids the nasolabial folds. This is how a malar rash is distinguished from other rashes and also by a biopsy. Here are some images:
I know you know what your rash looks like, but other people may not! If you look at the picture - especially where the rash ends - on either side of the face - the rash must not cross that "line" which leads to the mouth. If the rashes crosses that "line", it is not a malar rash.
Curiously, although the "malar rash" is associated with SLE, only a minority of patients have the malar rash. Just because you do not have the malar rash does not mean you do not have lupus!
I don’t have facial rash. But I get them in other places. And my labs have started changing..
Not for the better either. I now have brain fog today , please forgive me for not nailing the words
I now have my own lil ol tier and it’s speckled! But it’s not fun like a pony.
My labs like ANA come and go, but my kidney levels are declining , and what ever “do re mi “crud ( anti ro, etc) are playing whack smile.
I do know that I have changed rheumatologist 3 time due to quality of care ( like not facing me when I have a visit) or not answering questions about what I should do or expect.
I was with one who was caring, old fashioned, actually touched you, looked at your hands, skin, for 3 years until I changed insurance company during pandemic. I’ve had to wait 6 months for my new patient appointment with the new guy.
I have high hopes
And I believe that drs, like people, are in our lives for a season. I needed my last dr bc of her way she listened. I was ready to give up.
I’m so excited for my new appointment bc he has a 4.95 rating from patients. And I was really surprised at how few rheumatologist are in our city. 6 million people with 60 Rheumy? Boy, no wonder there’s no money for research. It’s obvious that we are a rare breed.
It has been a long time since you posted, and I'm not sure if you get this message, but I'm wondering if you have since gotten any answers regarding your health?
Like you, I also have been diagnosed with Factor XII deficiency, and have a lot of symptoms, but not diagnosed with Lupus since I have negative ANA and other negative antibodies (e.g. for RA, Sjogren's). I also have tiny red petechiae all over my abdomen - it looks like very fine blood spatter. Looking for answers.
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