Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Tuesday, May 4, 2010

Possible Vascular EDS?? No, thank you!

Well I saw Dr. K in Kansas City, MO.  He is a rheumy who works out of St. Luke's.  He said that he felt I have Vascular EDS, rather than Hypermobility EDS, and wanted to send me back to a geneticist to make a definite diagnosis.  As you can imagine I've been nervous.  I think since last Thursday I get upset and cry a lot easier and I'm slightly more stressed.  Jim wanted me to not look up anything about V-EDS but I have for two reasons: 1) I wanted to read the symptoms to know if there is a possibility I am Vascular type and thus how much I should be concerned 2) I am doing research to make a few slide shows for May EDS Awareness month.  I do have quite a few symptoms indicative of vascular type but I also have quite a few symptoms indicative of hypermobility type.  So yes, I am nervous, but overall I have more hypermobility symptoms and I hope for the best.

He gave me the name of a geneticist in St. Louis, MO who specializes in EDS.  It would be a LONG trip to STL but we are willing to make it for my health.   It took me until today, Tuesday, to gather the courage to call for an appointment to see this doctor.  Much to my dismay and annoyance this doctor no longer works with connective tissue disorders.  Nice, huh?  The receptionist gave me the name of a geneticist over at Children's Hospital in St. Louis that sees patients with connective tissue disorders.  She told me it would probably be best if I called Dr. K, who referred me, and asked him if he wanted me to see this doctor at Children's.  The receptionist also told me that most geneticists work in children's hospitals or children's departments of hospitals.  So, I called Dr. K's office in KC and got a voicemail that the receptionist was on the other line. Dang it! I hate phone tag.  So around two o'clock in the afternoon I started crying and Jim held me and I fell asleep.  When I woke up it was four thirty and there was a voicemail from Dr. K's receptionist returning my call.  Did I mention I hate playing phone tag?  I didn't call back because it was already so late in the day.  I plan on calling tomorrow.  

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