Welcome!

I've been ill for.. a long time! Diagnosed at 14 with PCOS and treated by laparoscopy but the little meanies keep coming back every few years and I've had another 3 operations since. At 20 I began working in London and all things seemed relatively sunny. Loved my job, wonderful family, great friends then *flmph* 4 years filled with crippling pain until eventually Google assisted with diagnosing bowel and abdominal Endometriosis. The diagnosis took this long because consultants, even professors automatically put the pain down to 'anxiety'. After one bodged operation in 2011 an -actual- specialist fixed me all up. Ready to go back to life again, excited about new job and *flmph* I lose my voice for a month, great.. Then in Jan 2012 (age 26) have a 'functional stroke' (happy new year!), thrombolysed, gain Raynaud's, dissociative seizures or functional attacks including facial spasm, dysphonia, limb weakness/paralysis, circulation problems and now in 2013 with the shiny addition of spasms and electric shocks all over the place! In short, I'm a bit broken. I've been 'officially' diagnosed with FND, PCOS, Endo, Raynaud's and Hypermobility Syndrome. With all those things combined it leads me to think there is something not quite right. I hope to learn, collect information and at very least I'd like to help anyone that finds themselves in the situation I am in. It's a scary place.

Tuesday, 5 March 2013

Dysphonia On-Off Switch


This video was taken by my dad last year. It seemed that when I compressed a rather lumpy vein in my head, it released the pressure on the vocal chords and returned to normal.

I was told by a doctor recently 'there is absolutely no way that there is a physical explanation for this.' Apparently this particular neuro-psychologist was an expert in all medical conditions known to man.

It's really really strange though because I genuinely feel the changes. You can hear them too, there's no trick involved. Ice cream can also make my voice go instantly (I've done a vid for that too). A few things can alter my dysphonia such as sitting and standing, temperature and pressure on the veins.


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