Do any of my symptoms ring any bells for anyone suffering with Lupus/Pulmonary Fibrosis? What were your early symptoms with these diseases?

Hi, I'm new on here and wondered what other early symptoms you had. I am not diagnosed but Lupus runs in my family, one uncle passed away and another uncle was recently diagnosed. I have had joint problems off and on, my arms and legs go numb randomly half of my body (left side) went numb during sleep and got up to walk and my legs gave out, i have been sick repeatedly laringitus, flu, cold in a matter of 3 months, after laringitus I developed breathing problem which my doctor diagnosed as asthma. I cannot excersize without having an athsma attack sometimes when I'm resting I begin coughing non stop until I use my enhaler. I have had HORRIBLE migraines as long as I can remember. My eyes are sensitive to light. I don't have any rash though. I recently have been seeing my doctor and I'm scheduled for an ultra sound because of pains on my mid and upper left abdomen.

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  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    I can understand how worrying your symptoms given that lupus runs in your family. However, unlike genetic disorders, lupus is not passed on from parent to child, although it is true that in some families there are more than their fair share of autoimmune conditions.

    It sounds like your doctor is taking your symptoms seriously, which is good, but this does not necessarily mean SLE.

    SLE is notoriously hard to diagnose unless someone has a malar rash, positive ANA and lupus nephritis! Most people do not. If you are worried, then I suggest you find a lupus specialist and ask for a consultation. I stress that only do this is you are anxious to the point that this is causing you a problem. I do not know where you are living so it would be difficult to say anything further.

    Lupus is called the "Disease of 1000 Faces" because it can mimic every disease known. My advice would be to try and stay calm and wait to see what your tests show. You can then discuss your concerns with the doctor.

    I do not recommend asking people about their symptoms and what to look for because each person can present differently.

    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 "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    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.

  • Thank you for inviting me for more support. I definitely have been showing symptoms since I was young but not the classic rash. Once I get my results I will still see a Lupus specialist to rule it out for sure if there is a negative or positive result.

  • I am glad to be of help and you can contact me at any time, even if it is because you need to talk to someone who is not family or friend.

    Be well!

    Ros

  • Thank you. It's hard when you are feeling so ill and have no explanation as to why. It is driving me insane and my husband is supportive but I can't help but to feel crazy.

  • I do understand what you are having to go through. Having a supportive husband is very important - but at times, he may also need support because he is also feeling helpless and powerless. Watching someone you love suffer can feel unbearable at times.

    I really hope you do not have lupus. However, even if you do, there is every good reason to be optimistic because the majority do well on medication and many come off all drugs. People with lupus can lead a normal life, have children and have the same mortality as anyone else.

    I am here if you need to talk.

    With good wishes,

    Ros

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