Advice

[MrsNapoli]

Hi all. I thought here might be the best place to get some advice, really appreciate any help. I suspect I may have lupus mildly. The reason being is that over the years I have had pulmonary emboli due to lupus anticoagulant, pleurisy, alopecia, restless leg syndrome, mouth ulcers, rashes on my cheeks, heart palpitations, hot flushes (not menopausal), regular headaches and less often migraines, issues with my ankles and extreme fatigue (I can literally sleep all day and wake up as tired as before). I don’t want to try to go and see someone if I am going to be laughed out of the clinic so do people think I am putting 2 and 2 together and getting 5 or that I might be thinking along the right lines? Thanks in advance.

[nanleighh]

Hi MrsNapoli, First of all, welcome to the forum. Have you shared any of your symptoms with your general physician? That would be a good place to start. Any of the symptoms you’ve described are not normal, and all of them together do point to an auto immune disease. Each different auto immune disease has its own set of symptoms as well as lab results that need to be abnormal for diagnosis to be definitive most of the time. I say most of the time because with diseases such as lupus each person is a little different in the symptoms they have. Most of the time you have to have a positive Antinuclear antibody or ANA test. If that is positive then they check for autoantibodies. They look at your test results along with your symptoms and if you meet the criteria a diagnosis is made. Not to be discouraging but for many of us it has taken many years for diagnosis. For me more than 10. We all have been where you are inherently knowing something is wrong but unable to convey that to anyone. You know your body best. That’s why I say your primary or general physician is the best place to start. Keep a log of all your symptoms and pictures of any rashes you have. You take care and speak up. You are your own best advocate. We have all thought we were a little crazy before our diagnosis was made. Hugs, Nan

[Mrs-Hdz]

Hi! I started getting symptoms of lupus for years before I was diagnosed. I felt aweful and I kept going to the doctors and I got a positive ANA but the rheumatologist said that I didn't have enough symptoms. I finally got tired of going to the doctor and I stopped, but when I got a sinus infection my PCP ran a full blood test and he found out my thyroid stopped working and I had sky high blood pressure and cholesterol. Once I got on medication, I started feeling a bit better, I think it was like remission, but after I went through a very stressful custody battle it came back with a vengeance and finally the rheumatologist gave me diagnosis. I was happy because people thought I was crazy. It took about 10 years to get diagnosed. Go to the doctor...take care of yourself and listen to your body- you know when something is not right.

[baba]

"I have had pulmonary emboli due to lupus anticoagulant”

Are you having treatment, or seeing a specialist for this?

ghic.world/

healthunlocked.com/hughes-s...

[Krazykat26]

By being on here u will get more info on how lupus affects our lives n u pretty quickly realise that we r all individuals..having similar symptoms but each of us is unique!! I don't think that u would be laughed out of the clinic..however it does take a while to get a definitive diagnosis n u will need testing for this..there r loads of autoimmune disorders I have discovered but u do have symptoms that definitely need investigation.

Lupus UK is a valuable resource..u can look at the website n become a member for just £10 per year..they produce a quarterly magazine which is very informative.

U are doing the right thing by being on here..welcome to the club!!

Write as much down as u can about your symptoms..take any photos of skin rashes..it may be some time before u get to see a specialist so keeping a diary is invaluable because symptoms can come n go xx

[Shorthouse]

You need to get blood tests .and move on from there .sounds like me(most anyway )could have lupus

[eekt]

MrsNapoli, welcome aboard, great info from the forum there!...rheumatologists look for at least 4 criteria for a SLE diagnosis and lupus anticoagulant, pleurisy, mouth ulcers, rashes on cheeks all count so keep photos and a diary and ask for a referral...there's lots of fine info on the LupuUK website on getting a diagnosis!

Wishing you all the very best...keep posting! xxx