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 ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Saturday, January 15, 2011

In a flare and in need of an EDS guidebook

I am in a dang flare today, so I'm propped up in bed with the computer on a pillow on my lap. My shoulders, knees, fingers, wrists, ankles, and feet are especially bothering me today.  Not long ago I wrote out a list of symptoms that I'm afraid may be pointing to something other than just EDS and fibro, a neurological problem for instance, like cranial instability or Chiari.  I've decided to cancel my appointment with Dr. W, the EDS specialist.   If she only diagnosis then it won't help me any.  I need someone who knows what EDS is and is willing to follow through with the patient but I think only Dr. Tinkle does that in the USA.

My rheumy (which is actually a NP) actually listened this time.  Yes, I know all of you are gasping in surprise and are amazed that she actually listened, but she did.  She still insists on saying "benign hypermobility joint syndrome" even though it's obvious I have EDS.  The geneticist I did see (whose notes where so bad I'm not sure if he was even there when he saw me!) diagnosed me with an either/or.  I do wish that I could get an EDS official diagnosis, but I can't drive all the way to St. Louis just for that.  It's a 6 1/2 hour drive round trip and we just don't have the money for that.  I don't know if I would be able to emotionally handle anymore bad news.  Besides, if I did have some sort of Chiari or cranial instability thing going on then I'm not sure what difference it would make.  I would not have brain surgery unless my life depended on it.  So, I guess I'm still a bit confused.  If anyone has advice please leave a comment!

1 comment:

  1. Perhaps you should point out to your rheumy that the British Medical Association now officially consider BJHS and EDS type 3 (hypermobility) to be the same thing, as of a HMSA conference a few months ago. It may help. (I have it too - original diagnosis HMS, confirmed as EDS-III last year.)

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