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Thread: Dont know what path to take

  1. #1
    Join Date
    Jun 2012
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    Default Dont know what path to take

    Hi! I just registered for this page which seems like a very nice support for lupus sufferers. My mother had lupus for 14 years until she died. I was always told that lupus was not hereditary to any significant extent but I have some very strange symptoms and Im scared that this might be lupus.

    My symptoms are:
    Anxiety during exercise (light headed, heart racing, failing faint even syncope)
    Loss of sensitivty in inner thighs and penile region
    Night sweats
    Diarrhea, blood and mucus in stool
    Reoccuring blisters in mouth

    Concluded tests:
    ANA-positive (dont know to what tither extent)
    Stool sample shows inflammatory process in GI tract
    EKG normal
    Lung X-ray normal
    Heart stress test normal
    Heart ultrasound normal
    Thyroid normal
    No protein in urine
    Nutrition uptake normal
    Good platel count
    Non anemiac
    Bloodwork done for cancer - negative

    What do you make of all this?

  2. #2
    Join Date
    Mar 2011
    pinjarra, western australia
    Blog Entries
    Thanked 1,844 Times in 1,279 Posts


    hi and welcome

    i have had lupus for over 35 years, only diagnosed for about 4.

    lupus is hereditary in 2% of the population.
    so yes it is possible that you have it from your mother.

    there is also another 60+ types of auto immune disorders that could come into play.

    but please remember that an early diagnosis, and modern medicine means that lupus sufferers have a fairly good chance to lead a full life.
    i was scared to bits when i found out i had lupus.
    i knew very little about it, and what i did know was not good.

    but today with proper treatment, many lupus sufferers are content with there life, and expect that lupus will not shorten it.

    may i suggest that you speak to a rhuematologist.
    they specialise in this type of disorder.
    please keep us informed as to your progress.

    also please read a few of the older posts,
    they are our personal experiences with lupus.

    again welcome.

  3. The Following 2 Users Say Thank You to steve.b For This Useful Post:

    Celavie (06-26-2012), Saysusie (06-26-2012)

  4. #3
    Join Date
    Feb 2012
    Thanked 3 Times in 2 Posts


    Sounds like it would be worthwhile to see a rheumatologist. They may run more specific autoimmune bloodwork. I'm not sure about some of your symptoms and how they relate, but I would make a list for the rheumie.

    My first symptom was night sweats. I am a female, too young for menopause, so I did start to pay attention when they didn't go away.

    Hope you get some answers soon. So sorry to hear about your mother.

    Good luck and welcome!

  5. The Following 2 Users Say Thank You to Chesterwin For This Useful Post:

    Celavie (06-26-2012), Saysusie (06-26-2012)

  6. #4
    Join Date
    Jun 2012
    Thanked 0 Times in 0 Posts


    Thank you for the warm welcome! I am sorry for all the spelling errors in my initial post but english is not my first language.
    My GP sent me to a GI doc but not to a rheumatologist. In Sweden, where I live, its not so easy to get an appointment
    with a specialized doctor, however I will try to make the GI doc allow me to see a rheumie. My GI appointment will be
    sometime in the fall. These are not new symptoms, Ive had them for eight or so years so I guess there is no rush.

    My mother had a very bad case of lupus or Devic syndrome, the docs wasnt actually 100% sure. She got an inflamation
    in the optic nerve which made her blind and sometime later she was left a paraplegic after her spinal fluid was inflamed.

    Thank you again! I will post when I get more definite answers, but Im guessing that I will not know for another year or so.

  7. #5
    Join Date
    May 2007
    Seaside, Ca.
    Thanked 948 Times in 732 Posts


    Good luck with seeing a specialist. Given your family background, couldn't your GP push to get you an appointment with a rheumatologist sooner?
    Many of us here at WHL have family members who have autoimmune issues. Even though some docs claim that it is not hereditary, there do seem to be familial tendencies toward autoimmune issues. I think that you should push your doc really hard for the referral.

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