Over the past 6 months I have dealing with multiple symptoms and struggling to find a cause of my symptoms. Help – here is what I have been dealing with if anyone is good and putting puzzle pieces together.
Idiopathic hives/urticaria intermittent throughout my body, these have become less frequent in the last months but still occur. Joint swelling and pain, generalized muscle weakness and very fatigued. Raynaud’s syndrome in my hands, especially reactive to cold. I have episodes of reactive hypoglycemia and migraine headaches. I have abdominal pain and changes to bowel routine as well as weight gain and edema of my legs. In the last two months I have has two bladder infections (unusual for me prior to this the last infection was 14yrs ago).
I have had multitude of blood work completed (including ANA, glutaminase, CBC, double stranded DNA and more) all of my blood work has been within normal limits with the exception of my WBC which has be intermittently low over the last two years. Head CT for migraines - normal. Pelvic u/s – normal, echocardiogram – normal. ABD u/s showed nonspecific renal cortical thinning and increased renal medullary echogenicity, this concerns me but is yet another symptom and does not help me to prevent further damage from occurring.
The rheumatologist acknowledged my symptoms but could not make a diagnosis without changes to my blood work, she question an autoimmune disorder as a cause. I am frustrated and have seen three specialist and have appointments scheduled for two more.
I am functioning with all of these symptoms (I have missed only a few days of work) I know I could be much worse, I just want a diagnosis before I am not functioning well. I am cross posting this with hopes that someone will be able to help me.
Hi. I'm sorry you're frustrated, I know what that feels like. Here are a few thoughts & I hope others add more.
Have you seen a gastro & had a colonoscopy, to rule GI AI's (like ulcerative colitis, Crohn's, Celiac) in or out?
How about thyroid function tests? I was surprised to learn that skin problems are seen in more AI's than I ever realized. I knew about skin & lupus, that one was obvious---but not that skin problems (incl. hives) are possible in Hashimoto's thyroidism and in some of the GI AI's, etc.
Re: edema in legs, was urinalysis run?
I was dx'ed with lupus but did not test positive for anti-ds-DNA or anti-Sm, two autoantibodies that are in the lupus diagnostic criteria; instead mine was anti-Ro, which is seen in both Sjogren's and lupus. The moral of this is that many antibody tests need to be run, not just the several that are formal criteria. Did you see a whole slew on your labs? BTW, you could read those diagnostic criteria on the lupus board in the "sticky post" (permanent info post) section, which you'll see directly above the user threads.
I think long-standing infection, either bacterial or viral, can also deplete WBC's.
Hope others add more ideas &/or expand on these. It's frustrating, but I think you're seeing various specialists is definitely the right move. (I'm in that mode myself & can't even guess which specialist will hit the jackpot, urologist, gastroenterologist, or GYN.) Hang in there & let us know what happens next, OK? Best wishes, Vee