View Full Version : Is it or Isn't it Lupus?

12-17-2006, 03:23 PM
Hi Everyone! :)
I went on a High School Music Tour to Germany and Austria in March/April this year. While in Austria, I contracted an extremely bad case of Dysentery. I was very ill and my German teacher took me to the Hospital in Salzburg, where we were staying. The Doctor gave me Electrolyte Solution Sachets and told me to drink lots of fluids, which I did. By the time I came back home, I was extremely ill and the Dysentery was worse.

Since then, I have contracted Dysentery twice more; I constantly have kidney and bladder problems, which won't go away; I have passed nine kidney stones (and I'm only sixteen!); I have developed Temporal Lobe Epilepsy and Right Frontal Lobe Epilepsy; I constantly have ulcers in my mouth, nose or throat; I have developed Tachycardia, which gives me really bad heart palpitations and I always have extremely low blood pressure; I keep getting this strange rash all over my body, which even my Dermatologist doesn't recognise (!), so we have to get a biopsy of it the next time that I have it; I have developed Raynaud's Phenomenon; I have developed Celiac Disease (severe Gluten allergy) with Dermatitis Herpetiformis; I have developed Ulcerative Colitis; I am experiencing the most terrible joint pain, particularly in my wrists and kness; I have terrible muscle aches, muscle weakness and spasms; I have Asthma and severe allergies (including seven food allergies, Allergic Rhinitis and Contact Dermatitis); I have Irritable Bowel Syndrome with the most severe, chronic, chronic constipation; I have become photosensitive; I have terrible menstrual problems and chronic thrush (sorry!); I constantly have blood in my urine and in my faeces (sorry!); I have developed a Eustachian Tube Dysfunction; my glands have been swollen for over three months without ever going down (I tested negative for Glandular Fever/Mononucleosis and Cytomegalovirus); I have a constantly sore throat; I constantly feel weak, tired and drained; I always have really bad headaches; I often lose my appetite and then lose weight; I was born with an enlarged spleen, which has been causing me the most TERRIBLE pain recently; two weeks ago, I suddenly became paralysed for three days and ended up at my Neurologist; I constantly feel as if my organs are "popping", which is EXTREMELY painful; and, of course, I developed the characteristic Butterfly Rash across my nose and cheeks two months ago and everytime I'm really ill and have kidney or bladder problems, the rash comes back full force (I have it at the moment, actually). The rash does not itch or burn, but is EXTREMELY photosensitive.

I have been evaluated and my condition is definitely NOT psychological.

I have been hospitalised twice and have been extremely ill, especially recently. Infact, I came out of hospital only two days ago. My most recent blood tests show, amongst other things, that I have too much Creatinine in my blood, indicating a kidney problem and that there is too much Unconjugated Bilirubin in my blood, indicating a liver problem. However, I tested negative for A.N.F. I am seeing a Rheumatologist tomorrow, but could anyone tell me whether they think that I have Lupus or not?

Thanks very much! :)

12-17-2006, 03:48 PM
You certainly have something serious going on, and I understand why you would be frightened and upset, especially since you are so young. Although lupus could certainly cause some of these problems, it is unlikely to be causing all of them at once. It is not unusual for people who have lupus to also have other autoimmune diseases at the same time, because the same immune system malfunction that causes you to develop lupus can also lead to other autoimmune problems. It sounds like you could be in a similar situation, with more than one illness going on. The photosensitive rash certainly sounds like lupus, but it can also happen in other diseases. So you really need to have a complete work up done to rule out any metabolic diseases like porphyria, or other autoimmune diseases like scleroderma - either of which could cause symptons similar to lupus. I know waiting is hard, but with such serious medical problems going on, you need facts. Hopefully, you will be able to get some answers when you see the doctor tomorrow. Once you know more about what might be causing your illness, we can give you better information, and help you research whatever the doctor tells you. I will be thinking good thoughts for you and hoping the doctors find a answer soon.

12-21-2006, 03:16 PM

Thanks very much for your advice and support! :)

I have been diagnosed with Fibromyalgia, Sjogren's Syndrome and Lupus. They have also found out that I have T.M.J. Syndrome (problems with my jaw bone).

I am going for an ultrasound scan of my hands and wrists next month and have been given meds for the Fibromyalgia, which are starting to help, slowly, but surely. I am going to see an Opthalmologist about the Sjogren's Syndrome and my eyes.

Thanks again and keep well! :D

12-21-2006, 04:48 PM
I also had TMJ, it is a symptom of Fibromyalgia. I saw an orthodontist privately. She put a brace on my upper jaw for 18 months as I kept chewing through my night gum shields. It cost me 1500 but has totally cured my pain, worth every penny