Tuesday, March 8, 2011

New life- mini update

So I see an endocrinologist at the end of the month. I also see my PCP tomorrow to see if he can adjust my pain meds. I am having issues typing and I think my neurontin is becoming less effective.


  1. Have you ever been evaluated for Ehlers-Danlos Syndrome? It wouldn't show up on a blood test and it often announces itself with bad pain and is associated with bad stretch marks. Doctors telling you have tendinitis and bursitis (in between telling you you're perfectly healthy or that you have some kind of conversion disorder) also makes me think of EDS.

    You would have to go to a geneticist (who specializes in connective tissue disorders) to get diagnosed. And if you're planning a trip to Cleveland, skip the Clinic and go to University Hospitals instead. I live in Cleveland and I've been a patient at both many times.

  2. I've been evaluated for EDS. It doesn't fit because my skin isn't stretchy and my joints don't sublax. I have an appointment with a geneticist in May and an endocrinonlogist this month.

  3. Katelyn, who evaluated you? Your skin doesn't have to be stretchy. And your joints don't have to sublux. Or dislocate. They just have to have a degree of laxity. I hope the person doing the evaluation knew that.

    When I first suggested I had EDS to my rheumatologist he said my joints weren't lax enough (actually, they were.) And I actually do have stretchy skin! I wouldn't trust it coming from anyone but a geneticist and one who specializes in connective tissue disorders at that. The average doctor just doesn't know enough.