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 19 March 2013
Purple spot!
Thursday 14 March 2013
Early Attack
This is one of my earlier attacks last year. They were very scary at the time as we hadn't got much idea what was going on. During the video my face was having quite a violent spasm, I also was unable to speak properly, see properly or use my legs as they would just collapse out from under me.
Voice is back! Yey.
Hand Spasms, Voice Loss & GP Visit
- Repeat prescription with added nifedipine during the day along with the time release morning and night.
- Not knowing what to do in terms of the FND as I'd written to the consultant saying that the insurance wouldn't cover her referrals, yet heard nothing back from her in about two weeks.
- Increased cramping in the feet, always cold from the knee down and unable to feel temperature in lower leg. Also increased nerve problems, including the groin nerve thing then the swelling in the knees and lower leg with the blotchy pattern.
Phoned the chemist and ordered in my meds, yey for sorting stuff.
Anyway, here's a vid of how the voice was last night [13th March]. It was veeeery hard to talk :/ that's what I get left with after just trying to have a normal day. Not happy!
Thursday 7 March 2013
Everyday, something new..
The not so good stuff. Well the odd groin nerve thing continued. It's really not pleasant. Later that night in bed I realised that one leg was warm'ish and the other was very cold. I couldn't feel things properly then realised that it was because my leg had gone 'dead'. I really don't know why, it made no sense to me. I tried to just ignore it and put my pain hypnotherapy on. Up at 6:15am feeling rather off colour but managed to get a little more sleep. The foot cramping was more constant today, I don't even know how to stop it but the slippers certainly help with the pain :). Glands were really painful as was my jaw, I still don't know whether to get the freak teeth checked, hrm. The newer thing is these huge walls of tiredness that just hit randomly.
Anyways I've been talking with a friend, venting a little and she's urging me to give talking, reading doing medical related things a bit of a break as it's bad for my brain so for once I will listen. I don't know how these people put up with me but I'm very very happy and lucky that they do.
Wednesday 6 March 2013
Getting there!
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.