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

Friday, April 1, 2011

Saw Dr. W and got official diagnosis

Children's Hospital in St. Louis
I have so much to catch everyone up on!  First of all, physical therapy is still going great.  This week marks the end of my first month of PT.  Now for my big news: I got to see Dr. W in St. Louis.  As I mentioned before, Dr. W is a geneticist who specializes in Ehlers-Danlos and Marfans.  She was absolutely awesome.  It took us quite awhile to find the hospital, but we still made it there 45 minutes early.  If anyone is in the St. Louis area, or can travel to St. Louis, Missouri, then I can give you information on how to contact Dr. W by email.  Just drop me an email at spoonieblogger (at) gmail (dot) com.  For future reference, my email address is also at the very bottom of my blog.

At the beginning of the appointment I talked to a genetic counselor, which is something different than when I saw the first geneticist.  She was also very friendly and knowledgeable.  She looked at my family pedigree and commented that no one else in my family displayed any symptoms of EDS.  I saw Dr. W next.  She did a thorough exam, along with the genetic counselor.  She commented many times that a lot of doctors think that EDS affects only your joints when really it affects all of your body, including GERD and GI difficulties.  She also diagnosed me with POTS based on my symptoms but I am supposed to go back to my cardiologist to know for sure.

Dr. W gave me the official Ehlers-Danlos Syndrome hypermobility type diagnosis, not benign joint hypermobility syndrome.  So...kiss my ass doctors that treated me like I was lying!

Seeing Dr. W has also given me the courage to go and see a competent neuro to discuss possible Chiari.  I listed all my symptoms that make me suspect Chiari in an earlier blog here.  I just really feel that there is something going wrong neurologically that is not being looked at and taken seriously, so I'm going to go to University Hospital to see a neuro.

Dr. W had a copy of the write-up she did of my appointment.  (I'm really sleepy, it's 1:30 am, please don't judge my grammar.)

My physical therapy was approved for one more month.  I have a snazzy new red walker and kick ass Oval-8's now.

What should I name my snazzy new red walker?

My Oval-8's are almost my flesh tone!

1 comment:

  1. I am 24 years old and a hypo patient, too.I eat healthy foods and I exercise daily. I'm glad to have found bovine thyroid . I really like it!


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