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

Saturday, September 4, 2010

My head is spinning with questions

I'm frustrated.  My neurologist told me he thought I had a mini-stroke (TIA) but ran no tests.  He just told me to take an aspirin a day and asked me to show him my EDS.  Actually he didn't ask he grabbed my hand and tried putting it backwards.  I don't like people touching me so I took my hand away and bent it backwards.  It was a painful day anyway and that caused even more pain.  I was kinda pissed that he didn't seem to believe me.  He'd never heard of EDS, either.  How could he not believe me when he didn't even know what EDS is?

Because he never ran any tests I have no idea whether or not I really had a mini-stroke or not.  So I have to live on the assumption that I did.  That's scary!  I don't have high cholesterol and I don't have high blood pressure.  I don't know whether a mini-stroke can happen as a vascular part of EDS or not.  I know that all types of EDS can have vascular complications, though.  Doctor what's-his-face said I have H-EDS, while Dr. K. said he thought I have V-EDS.  Of course Dr. K is a rheumy not a geneticist.  I do know that he's seen people with V-EDS, because I was referred by a girl on Facebook with V-EDS that he diagnosed.  He still sent both that girl and myself to see a geneticist who specializes in connective tissue disorders.  He said that just because I haven't had vascular complications yet I could still have V-EDS.  Or I guess it is always possible to have a mixture of different types, many of my EDS friends do.  Of course our car is broke down so I missed the EDS specialist's appointment four or five hours away.  I just took a really long sigh!

I thought stroke was a symptom of vascular components of EDS but when I asked my EDS friends they didn't think so.  I know that my friends aren't doctors but most of us know more about EDS than our doctors do.  Then when I read Dani's story she said that she's had strokes as a complication of EDS.  So I'm confused!  Plus, like I said for all I know I may not have had a mini-stroke because he did no testing.  Then again I've also read that you sometimes can't test for a mini-stroke, especially if it did not permanent damage.

I don't know what to believe.  I think another long sigh is in order.


  1. I don't have answers. I can tell you're frustrated and I would be too.
    Sighing is non-self-destructive and seems like as good a response as any.
    It is really hard when my friends know more than my doctors and I con't rely on my doctors to really help and guide me.

    My ophthalmologist told me that I don't look like someone with EDS. I kinda laughed and didn't know how to respond but the funny thing is I do have the pointy chin, thin lips, wide set eyes, and blue sclera that I've read are associated with EDS. Oh plus the doughy skin and bendy bits. I'm not sure if he fully believes me but he did say that now he knows why he had to hold his breath so many times during my cataract removal. Docs can be so silly.

  2. We do know more about EDS than most doctors! It can be pretty frustrating. I have thought I had it for the last 2 years and I was just diagnosed last week...I have Hypermobility Type EDS and traits of classical...I have a medical history a mile long, I'm 24 and very frustrated that there has not been more of an awareness of this disorder to doctors!

  3. I don't know much about EDS except I've heard of it (though you and I have FM and other things in common), but I do know a fair bit about stroke.

    Did you know migraine can look very like a TIA? You don't list migraine but it's possible to have one if you never have before, it is a thoroughly weird condition after all. I had a look at some earlier posts but couldn't find a description of what happened to you - but one floppy arm, slurred speech etc *could* perhaps be migraine.

    At the other end of the reassurance scale (meaning, less reassuring), a 'real' stroke can be small enough, or just lucky enough which bit of brain it zaps, to look like a TIA. The only way to tell is a scan, as far as I know; my expertise is from experience, not training – I have no medical qualifications.

    Came here from the FWD/Forward blog, nice to meet you :) but the other thing about having a migrainey head is it makes your colour scheme very hard to read...

    ~ mand


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