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fede_rico
03-05-2011, 01:07 AM
Dear all,

First of all, sorry for my English. It is not easy to talk about symptoms for a non English native.

I am wondering if I can have lupus. I am 37 years old. I was diagnosed psoriasis 8 years ago because I have a big red rash in my armpit (very itchi). After a biopsia I was diagnosed psoriasis.

After that I have had other rashes on some folds and I have been dealing with them using corticoids during these years. (Curiously, after suffering a pneumonia some years ago I had the intuition that my rashes will get better. Interestingly, rashes disappeared for some months).

Well, some months ago I suffered a severe pulmonary embolism. At this moment doctors still do not know what caused it (I am young w/o risk factors). I felt sick (like a cold) for two weeks before being diagnosed of the pulmonary embolism (at that moment I can't breathe). Interestingly, many rashes appeared at my face and scalp during the embolism (but not of the same kind of rashes at folds, they look more like eccema).

Now I am again suffering a large cold and have also much more rashes at my scalp than usually.

I am wondering if I can have lupus. I am going to see my doctor soon and would like to know if it makes sense that I suggest the lupus possibility to my doctor.

Thank you!
Federico

tgal
03-05-2011, 05:47 AM
Hello Federico. We are so glad that you joined and don't worry about your English, you did wonderfully!

I think it is very smart of you to ask your doctor about Lupus and the other AI diseases. You need to have your doctor do a Lupus panel. I am sorry this is such a short reply but I have a really bad case of brain fog right now.

Once again I am glad that you decided to become a member of our WHL family!

fede_rico
03-06-2011, 02:59 AM
Thank you very much, Mari, you are very kind.
Now, I feel more self-confident about suggesting the Lupus possibility (or other AI) to the doctor.

Nice to meet you!
Federico

jmail
03-06-2011, 09:05 PM
Welcome to WHL, Federico. Psoriasis is AI, and there is an arthritis with psoriasis as the main "symptom" - psoriatic arthritis - surprise! A fellow I work with has it, and he has some bad rounds with it. It seems to knock his immune system down as it's attacking, much like it sounds like happens with you. However, that pulmonary embolism is not a minor symptom. If your lungs hadn't caught the clot, your brain would have... Not good. I can't remember for certain (I think that fog that Mari was in is thickening over here... tic), but they should have been able to tell from blood work what the clot was. They can't always tell where it came from, but perhaps you banged your shin on something a few days before? Some other impact to your body that could have damaged your blood vessel(s) and caused a blood clot? Just because you're "young", doesn't mean you don't have risk factors. Further investigating into that is definitely called for. Do you tire easily? Do you have difficulty thinking clearly when your skin breaks out? Do you have achey joints and/or muscles? Do you bruise easily? Start thinking of things like that, write it all down, and take the notes to the doctor. Take pictures of your skin when it breaks out, and show those to the doctor also. Best of luck with it, but be sure and check further into that pulmonary embolism. Those are dangerous.

fede_rico
03-08-2011, 01:53 AM
Dear

Thank you very much for your response.
I know a pulmonary embolism is something dangerous. That's why I am wondering if I could have lupus. Doctors still have not found a reason for my (multiple) embolism.

With respect to the questions you suggested:

Do you tire easily?
I think no, but I sleep a lot (I need about 9 hours per day).

Do you have difficulty thinking clearly when your skin breaks out?
No

Do you have achey joints and/or muscles?
Yes, sometimes on my wrists (may be caused by a sports fall) and also on my knees.

Do you bruise easily?
No

Thank you again!
Federico

tgal
03-08-2011, 06:55 AM
Good morning to both of you!


I am a not sure if any one has told you but there is an Auto Immune disease called APS that actually causes people with it to clot too easily. It can be the primary diagnosis or, like many here, the secondary diagnosis (meaning that Lupus or RA is first and may be the reason for the APS. I am going to put a link to the APS Foundation's website. Hopefully it will give you some good info and please keep coming here to visit. We enjoy having you and everyone is welcome. Please let me know what the doctor says about APS

http://www.apsfa.org/

fede_rico
03-17-2011, 02:15 AM
Good morning. I just wanted to tell that the doctor seemed not very convinced about the AI possibility, but she asked for many analyses, and one of them is about "antinuclear antibodies" (which are related to AI diseases). All this mean that, may be, in a couple of months, I will know if I can belong to this forum.

Saludos y gracias,
Federico

tgal
03-17-2011, 06:49 AM
Good morning. I just wanted to tell that the doctor seemed not very convinced about the AI possibility, but she asked for many analyses, and one of them is about "antinuclear antibodies" (which are related to AI diseases). All this mean that, may be, in a couple of months, I will know if I can belong to this forum.

Saludos y gracias,
Federico

Fede Rico... You belong in this forum even if you don't have a Lupus diagnosis! This forum is for anything, with any AI disease or anyone trying to figure out what is wrong with them! NEVER feel like you don't belong simply because you don't have an answer. For many here it took (takes) months or years to get a firm diagnosis! Sooooo....

We expect you around here for a very long time! Diagnosis or not!!

Now, on to the labs. Yes, a positive ANA (the test she is doing) is a good first sign of AI problems but it can be positive for many other illnesses as well. Also know that about 8% of the people with Lupus have negative ANA. There is another test that will usually come out positive at some point down the road and that is a DS DNA. Once again, there are a fraction of people that show negative when blood is drawn. We MUST remember that there is NO TEST for Lupus! Too many doctors don't even understand how to diagnose Lupus so it is no wonder so many people are left on the edge of the cliff not knowing which way to go!

There is a "sticky", or post at the top of the New Members page, that give the 11 criteria for diagnosing Lupus. You only have to have 4 of those and the doctor would have had to rule out other reasons for they symptoms but no where on that page say there is a single test for Lupus because there isn't one.

So just remember, you are welcome here with a AI diagnosis or not! You are family and family never gets kicked out (here at least LOL)

Colleenc
03-17-2011, 01:39 PM
Hi!! And welcome... Your post sounds strangly familier!! I myself before being diagnmosed with Lupus suffered multiple blood clots (2 pulmonary embolisms, DVT, a clot in the arytery in my arm, ischemic bowel caused from a clot and TIA's (which they think I may be having tiny clots going through my brain stem), some of which I got even on blood thinners. All this started almost 4 years ago today. Before that the only sign I had was a DVT during pregnancy a few years previous. After the first 2 clots I had a very good respirologist that thought something maybe up. He sent me to a heamatolgist at a large teaching hospital and that's where they started testing me. Have you had blood work to see if you have clotting disorders? The reason I ask is some of them tend to be more common in people with AI diseases. I test positive for 2. I'm heterozygot positive for factor V leiden and I also have anticardiolipin antibody syndrome (APS for short) after I was diagnosed with these all my other sympotoms started, sore joints, mouth sores etc.... So the same doc then sent me to a rheumatolgist at the same hospital did blood work etc... and I was diagnosed with Lupus. For me the clotting has be a far larger and more dangerous problem then my lupus. I have suffered lung damage and scarring which makes breathing very difficult sometimes. I also worry as to when the next clot will happen. I will be on life long blood thinners and I will be having a filter put in my lungs once my currant problems get under control!! I think it is important that you find out what caused the clots!!

Colleen

fede_rico
03-18-2011, 01:40 AM
Dear Mary,

I just attempted to be ironic/funny, wasn't thinking to be expulsed for being a non-lupus person. However, it is very nice to see how tender and warm you are. I have looked to the 11 criteria and I am only confident about 2 or 3 of them. Let's see the results of the test.

Have a very nice day,
Federico

fede_rico
03-18-2011, 01:53 AM
Thank you very much, Colleen

I am also on blood thinners but sometimes have the impression of being clotting. And I have also respiratory difficulties but my doctor said that I should be almost perfect (what sounds strange for me because I had several pulmonary infarctions -on both lungs- and also something -I don't remember the name- that means that part of the lung was seriously affected).

Regarding your question, in a couple of months I will have a lot of tests to look for the causes.

I hope you are well,
thank you!
Federico