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.
Thursday, 14 March 2013
Hand Spasms, Voice Loss & GP Visit
I've just got back from the doctors, it might not seem like a mammoth effort but for me it seems to be. I was falling asleep in the waiting room, I don't even know why I'm so tired. When the thingy bleeped and I got up to go in it was like a truck had hit me or something (rubbish description!). I was so dizzy I thought I was going to fall over. Going to the GP with no voice is even more of a challenge. I went in and the first thing she said was 'it's not that cold out there surely?', so I nodded and sat down. I passed her the note I'd written which went along the lines of:
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.
I think it's a big ask to have a 10 min appointment and go into your GP with something like the notes above but she was brilliant. She began by going through the presctiption and sorting that out.
As far as the FND stuff goes I believe it's seen as a 'closed avenue' for now. Seeing as the consultant neurologist spent such a long time telling me how bad and serious FND was, then didn't know who to refer me to. Then once she'd suggested people working in the same building as her were refused by Bupa to ignore the patient and not suggest NHS alternatives.. well.. it doesn't seem quite right.
I tried to talk to my GP as best as possible (even though my head felt like it would explode with the pressure) and explain the consultation with the neurologist a little more. She seemed unconvinced that in such a short space of time the consultant could ascertain enough information to justify that diagnosis. Some things fit very well with FND but some things don't. When I showed her the photographs of my legs she asked if the consultant had seen them. I said no, and that she wasn't interested in my other conditions or vascular stuff. My GP didn't seem to be convinced that these had anything to do with FND.
So she's given me her email address and the next step is to look into vascular consultants at some of the bigger hospitals in the city so hopefully they will be able to look at this and see what's happening. Who knows.. something might come of it, something might not.
As far as my APS tests have gone, I thought they'd come back negative but turns out the results weren't in yet. Hrm...
Phoned the chemist and ordered in my meds, yey for sorting stuff.
My mind is all over the place at the moment so I just don't know what to think! Erk. I'm going to try and do one more thing productive today and then watch something nice and take my mind off things for a while.
Oh yes, so I was really upset last night. I'd attempted to go to my sisters and have a nice day, I tried to 'rest' as much as possible throughout the day but that wasn't really effective. At about 9pm I started to feel a bit tremmory and ill. The drive home wasn't too pleasant, I think it's made worse by all the whooshing headlights so in future I need to not drive in the dark. When I got home I realised the huge pressure in my head was back and I couldn't speak. I was so tired by when I lay down in bed my neck was so uncomfortable and I just felt so ill, then the migraine-headache thing set in. So, I fell asleep with my head on a hot water bottle and listened to my pain management hypnosis, which at least got me to sleep. I'm waking up about 4 times a night now with back spasms which isn't pleasant but at least its not the bowel endometriosis, ach! I'm still thankful every single day that I'm not in that much pain any more.
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!
The night before last I began to get weird hand spasms so I madde a little vid of that too. Exciting huh?
looks like Hughs syndrome / Sneddons syndrome. Legs are livedo reticularis with neurological symptoms with positive APS (although not all patients do). Rarely diagnosed correctly. Maybe something to look into.
fnd awareness week is April 7-13. FND Awareness day April 13th.
Hi there, thank you for your comment. It's very confusing for me as I've been contacted so many times by people through the blog and healthunlocked, and they say the same things which all come back to Sneddons/APS. Not a single specialist I've seen has mentioned this so I'm not sure what to do. Hopefully we'll get somewhere in the end..
looks like Hughs syndrome / Sneddons syndrome. Legs are livedo reticularis with neurological symptoms with positive APS (although not all patients do). Rarely diagnosed correctly. Maybe something to look into.
ReplyDeletefnd awareness week is April 7-13. FND Awareness day April 13th.
Hi there, thank you for your comment. It's very confusing for me as I've been contacted so many times by people through the blog and healthunlocked, and they say the same things which all come back to Sneddons/APS. Not a single specialist I've seen has mentioned this so I'm not sure what to do. Hopefully we'll get somewhere in the end..
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