LONG post! Not diagnosed but strong suspicion...
that I do have lupus or maybe some other autoimmune disorder. This is all so very confusing and any advise would be great! I am a 35 yr. female if that matters :)
I have had an array of vague symptoms for some time now. Below is the the info. that I now take to doctor appts. just so I don't forget anything! I am currently having all the symptoms except for the hives. I have had 2 rounds of the ALL the symptoms listed below. I have had several rounds of all the symptoms minus the hives.
Here is a list of symptoms as they progress. When this happened last October (2009) they manifested in an almost identical fashion.
Prior to being sick both times I was happy and healthy and doing fine. I was eating organic meat, some chicken and fish (salmon or cod). I was also eating a lot of vegetables and fruit. By mid summer (2009) I had cut out almost all bread, cereal, pasta- anything with gluten in it thinking that a strange skin rash (on one hand) and stomach pain was caused by a gluten sensitivity and an inability to lose weight.
These symptoms approx. 3 weeks prior to the onset of hives.
-Severe joint pain through out body mainly at night and a bit in the a.m.
-Some minor depression
-Frequent urination especially at night. Some nights can reach up to 15+ times.
-Mental and some speech confusion
-Some hair loss
Then the fun starts:
-dark, concentrated urine even with an increase of water
-Anxiety attacks? Low blood pressure with a racing heart. Heart rate is double what is normal for me. Blood pressure systolic is a good 15 points lower and diastolic is only 5-10 points lower.
-Dizzy spells/almost fainting.
-Loss of appetite
-Pain in the abdomen and sometimes back if I do eat even a small meal.
-Weight loss. 35 lbs in October and about 15 lbs in the last 3 weeks (May).
And then the party!
-Hives start forming on the back of the head/base of neck.
-Within a week the hives just take over the whole body.
-Some additional joint pain will start up again but not as bad.
-Stomach pain and back pain in the form of painful cramping.
-Angioedema and hives are severe including tremendous swelling of the eyes, lips, hands and feet. In October I had tongue and throat swelling as well.
Checked for lymphoma (due to swollen neck lymphs in Oct.) and had a CA-125 test (a large, complex cyst was found during a CT scan). CBC, sed rate, RA and ANA test all done showing low numbers. The sed rate was repeated and the value was even lower than in October. I have had SSA, SSB, DS DNA, C3 and C4 done and all within "acceptable range"- these were done in 2009. I don't think they were repeated since then.
In December (2009) went to a GI doc and they did a colonoscopy and upper GI. Hiatal hernia and gastritis was found. Biopsies done during colonoscopy found no problems.
Checked for parasites as well as allergy testing for pretty much everything. GI doc checked for celiac, gluten intolerance and crohn's disease.
Low grade fevers occur randomly through out illness.
40 mg of prednisone was given for approx. 3 months before symptoms finally went away. Allegra worked great in October but is only giving me about 12 hrs. relief now.