Monday, April 19, 2010


Um... I'm a bit excited!

I received a phone call today from a wonderfully pleasant lady who works at the movement disorder clinic.

She gave me an appointment for 10:30am May 31st (which she so kindly booted somebody else out of). She told me she would go over my file with the doctor to see if she could get me in any sooner, as the doctor will be on call for the next few weeks. About an hour later I got another call. She has rescheduled me for May 7th at 2:30pm. (Which is WAY better than August, which is when normal appontments are being scheduled for)

Three more weeks.

I'll have my answer in three more weeks. (Happy Dance!)

Of course, as I had already booked my vacation for that week, and I had planned on leaving the province to go camping, I may have to rebook my holidays. Oh well, I've already pushed them back 3 weeks... What's another week? Especially if I can get a diagnosis out of it?

My pain levels are being stupid... Anywhere from a 2-3 on weekends when I am actually able to relax, to a 9-10 on weekday evenings after a full day of NOT RELAXING. It got so bad on Wednesday, Thursday, and Friday last week, I was reduced to a whimpering puddle of goo.

Friday night I went out to karaoke with my hubby, our roommate, my best friend, and a couple of her friends. I was fine for most of it, then I started twitching, and I dislocated my shoulder, reduced it and dislocated it again, about 4 times in the course of 30 seconds. The last time it refused to go back in, so I had to put up with a lack of blood flow causing numbness, and a pinched nerve causing complete sensory loss and/or excruciating pain, and an inability to move my arm. This went on until I got home, smoked my medicine, and went to bed.

My shoulder played a fun trick on me on Thursday too. It felt like it was almost in the right place, but not quite... So I poked it, prodded it, massaged it, and finally got it to go back where it should be. During all of this, the bones ground together, the connective tissues went clicking against the bones, the muscles spasmed, and I found that I have a rather large squishy spot, which on my other shoulder seems to be filled with... something... Muscles? Tendons? Ligaments? I don't know... Tissues of some sort. But on my bad shoulder, it just feels like jello.

Also... I dislocated/subluxed something in my coccyx last night... Don't reach for your iced tea without first setting down your book... Apparently, it makes all the difference.


Achelois said...

Simply brilliant news on the appointment. If I could jump for joy I would, so instead I have the biggest grin on reading this news.

The holiday thing is just rubbish don't you think but I would have done the same for the appointment.

I read your last comment on your last post and just so understood how you must be feeling. Some respite from all of this would be a welcome break for you.

I was lucky to have a prolonged course of physiotherapy which involved shoulder re-patterning. I am worrying slightly that I have put this in a comment before but will carry on! Basically the muscles surrounding my shoulder had basically gone to sleep apparently because the brain being a clever thing chose to switch them off because it was too painful not to. So my very patient physio taught me and this took months and months in part down to the chronic proprioception that us EDS lot have, to switch each individual muscle back on and learn to hold my shoulder in the proper position to try to reduce the amount of times I dislocate. To hold the shoulder in this position meant I had to re-teach myself to locate the muscles that hold everything together. I went twice a week for six months. Sometimes the physio would give my shoulder a break and strap it which was great although because of skin tearing he had to be pretty inventive as I would bruise and have cut skin initially. Shoulder re-patterning is just brilliant and it really helped me not to hold my shoulder in the pain position so much.

Any way thats enough of all that!

Stress on weekdays sounds massive and I am not suprised you went gooey. I am not sure how you can change weekdays to incoporate pacing and pain management though. Apart from the obvious 2mg or more of diazepam!

I twitch a bit to be honest and have been trying to work out when that happens for me. I have just realised its when I am hyperextending a joint without realising and I sometimes do a little twitch followed by a bigger one.

Your twitching and jumping though sounds more like the type my son and husband have and they both have JME. Son was diagnosed after an ambulatory eeg (Iget mixed up with ecg and eeg but it was the one with all the eloctrodes stuck to the head with a big bag to carry around) he wore this for 72 hours and bang diagnosis. Husband obviously didn't have the benefit of all this new neurological technology many years ago (he is 50) so he only found out what type of epilepsy it was by default really via my son's diagnosis.

I honestly hope you get an appropriate diagnosis, sometimes when something is wrong with me not related to the EDS its almost like a distraction to have it and that happened with my PHN!

I am off to the neurologist soon for various odd symptoms so I really understand the correlation you make with MS and some of the stuff thats going on with you. Sometimes I think a lot of EDS really has cross overs of symptoms with MS. I read somewhere the other day that a study was done about the likliehood of an EDS patient having cocurrently MS and the statistics were astonishingly high! Me being me couldn't remember where I read that but I did!

I only meant to comment to say I am so pleased for you that the appointment at the movement disorder clinic is sooner rather than later. So I off I go but not before saying - I really really hope that this week gives you a break. You thoroughly deserve one.

BubbleGirl said...

As usual you seem to be a fountain of information. JME seems to be the closest fit I've seen for symptoms. I will have to remember to bring that up with the doctor.

I still don't trust any of the physiotherapists I've met. I've never met one that said they'd even heard of EDS... Let alone treated someone with it. Add to that the fact that it's not covered by health care, because it's not an "injury" it's a "condition" and I'm not "disabled" so I can pay for it myself... Canada really sucks right now as far as non-emergency health care goes.

Our emergency services are great. Our regular stuff, like healthy-dude-gets-his-physical-once-a-year is pretty good... Urgent care is fair to poor depending on the field, and specialist care is sh*tty.

~~~~~Thought Transition~~~~~

I think the biggest difference between work and home as far as cause of twitching goes, would be the way I sit, as opposed to any "stressors." It seems that I can be just as stressed out at home, as long as I'm physically seated in a relaxing position. I don't sit like "normal" people (probably because I'm bendy), and at work, I hae to sit like normal people. Hips and knees at 90 degrees (in order to type, answer phones, etc.), instead of all scrunched up or twisted (which is comfortable).

As far as pain management goes, I have still only found one thing that works, but it makes me unable to function in a work environment.

I also read about the EDS and MS symptom overlap recently but with the symptoms I had, I was doing A LOT of research. I could have read it anywhere.