To Dawn Kevies Mom! About Lupus Posting

    • Anonymous
      May 24, 2009 at 10:49 pm

      Hi Dawn! I read in your posting to Jeff about the question of Could this be Lupus? I don’t know what Kevie’s symptoms have been but can give you a little information about the disease.
      They call Lupus the Wolf Disease. Mainly because it sneaks up on it’s prey and then attacks. It is quite possible that Kevie could have Lupus. But diagnosing the disease can be rather hard and tricky. A person much reach 7 of 11 criteria including 2 positive ANA’s in order to be considered Lupus or called Lupus. It can take months and even years to diagnose unless you get lucky and show positive labs right away. In a nerve biopsy several years ago when they first diagnosed me with neuropathy they said it was longstanding meaning I was born with the disease. I remember in my childhood having problems but my mother called it growing pains and never got me checked for it. Several symptoms to look at! Migraines or headaches, mouth ulcers that come and go, nose sores that come and go, low grade fevers, joint pain.. two or more joints hurting at the same time frame, lung pain, pericarditis, fatigue that feels like you have the flu, muscle weakness, upset stomachs, sometimes vomiting which I get alot, a rash that can be mild or severe that looks like roscea but it has a butterfly look, livedo reticularis where your body in the cold looks splotchy looking giving off a purplish hue and looks like spider webs, numbness and tingling, carpul tunnel syndrome, Nerve Damage that can go into CIDP. Vasculitis, Nephritis. A person with Lupus when I started out you stay sickly alot. Get infections very easily. Lymph gland pain under the neck right under the ears. Conjunctivitis. Lupus can basically attack any organ in the body that it wants to attack. Mine started attacking the nerves and then went into CNS Lupus. When I was a child it really did not effect me that much until I reached puberty. Then things started to happen! Oh! Anemia is also amother criteria which I had 3 times as a child. Bad thing about this disease is sometimes the labs will come out normal over and over again not showing any problems for the doctor to see. I went for 5 long miserable years getting sicker and sicker and when I did test positive I almost died with CNS Lupus. Another symptom which not all Lupus patients have is photosensitivity. Breaking out in a rash that looks like sun poison when exposed to the sun. I am photo sensitive! Because these symptoms mimic so many other diseases some patients even though the doctors see it and suspect it won’t diagnose it until they are positive meaning labs showing up and reaching that 7 criteria list! The thing with this disease is not all symptoms happen at once. Making it hard for the patient to realize that all these symptoms are related. One day you have a migraine and sometimes it last for days. The next day you have several joints hurting. Then the next day you feel like poop with terrible fatigue. then you can be fine to suddenly get stomach pain and end up in the bathroom for hours in pain then you vomit because the pain is so bad. Wake up the next morning with a mouth ulcer or several ulcers. I wake up each day not knowing what to expect! But as a child I only stayed sickly alot catching every bug around.
      I got strep throat in my late 20’s and it went into scarlet fever. Oh my gosh! That landed me in ICU for 3 days! And the funny thing was I didn’t even have a sore throat. It happened so fast! Felt fine several hours before I got sick to suddenly get a sore throat and ended up at the same time with a 105 fever! And started vomiting my brains out. Then the strange rash appeared. I thought I had the flu and stayed sick 3 days before Andy finally called 911 and they rushed me to the hospital. By this time I was having seizures!
      I don’t know what Kevies symptoms have been but these would be things to look out for with him if you suspect Lupus. At least if you notice any of these symptoms you can start documenting them and see if you see any patterns to them. Then let the doctors know! Boys can get lupus too! Hope this answered your question! Hugs
      Linda H