Anyone here know how to decide if a case is primary or secondary? Our son, Royce was recently diagnosed. He fits the age range for Primary, but one site suggested that a positive response to aspirin treatment suggests secondary. We started aspirin treatment yesterday so too soon to know if this will help. He’s a complicated kiddo with the ADHD/OCD/Spectrum cocktail add in learning disability. Worried there could be more happening if EM is secondary.
Only the proper lab tests can tell you that. I don't know much about children's health, but I know that my rheumy tested for a slew of possible underlying conditions, and that information from the tests is invaluable when deciding on treatments to try and symptoms to watch out for. Has your son had any blood tests done (CBC, antibodies, sedimentation, complements, etc.) or been checked for blood or proteins in his urine?
He has had blood tests to rule out autoimmune disorders, and diabetes. All negative. I don’t think they have checked urine. What would we be asking to look at with urine samples?
I'm not sure, specifically. I know that properly functioning kidneys are not supposed to let much (if any) protein or blood through, and my doc thought it important to check that.
I'm not sure if anyone (other than those with hereditary EM or genetic test proof) can be 100% sure that their EM is primary, since EM can show up long before an underlying issue becomes apparent.
A big panel of good-looking blood tests is very reassuring, though, so as long as you've been thorough in that regard, you're doing the best you can for your boy. I know that's not the definite answer you hope for, but we EMers simply have to do the best we can on limited research. You probably want to ask your doctor if you should repeat those tests in the future to keep an eye out for underlying causes.
I know this must be really tough for a kid, and I hope the best for you guys in finding answers and the right treatment!
Thank you so much LibbyK!
Hi, I had genetic testing 2 years ago because I was worried I might have passed it onto my daughter. Thankfully I don't carry the gene and as suspected mine is secondary. I was told that EM symptoms and diagnosis often precede diagnosis of the primary condition by about 8 years. I was tested 7 years ago for many different conditions including ms all of which were ruled out but then 6 months ago MRI showed lesions consistent with ms, my lumbar puncture result confirmed MS diagnosis more recently. I am not sure if that is my primary condition or whether it could be something else.
Would your dr do genetic testing to find out if it is primary or secondary? I'm in the UK and was referred to London Kings Cross for my testing. I hoep you get some answers soon and that your son gets some relief from the asprin.
Laura
Thank you Laura! I will have to ask his dr. about testing. We live in Montana and just recently there was a pediatric geneticists who moved here, so we might have good timing.
Hi, I've just seen this discussion and thought it might be worth looking into, I'm wondering if the EM symptoms your son is getting may be due to his ADHD medications??
http://forum.livingwitherythromelalgia.org/forum/topics/question