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#1 UpsyDaisy

Posted 18 November 2012 - 12:18 AM

Okay, this is a little complex, so will copy and paste my recent update from elsewhere on the boards, but does extend to this area of EB, as I also received a heap of advice and help.

QUOTE
Hi,

So many in this section have helped me on my journey over the past three years so I thought I'd put a quick update.

I still do not have answers, but getting there now I think. I saw my Neurologist today and have a copy of my report. I don't quite understand it all at the moment, and just have to wait it out for another appointment to understand.

The tremor assessment shows I have a irregular kinetic and postural tremor. EMG findings aren't consistent with a psychogenic tremor. The report is full of EMG bursts and peak something or rather ranging from 5Hz to 9Hz. Findings say dystonia. Kind of feels like a "symptom" diagnosis more than anything. From what I understood today the dystonia is causing the tremors. As dystonia is a broad term - it's a step in the right direction but not an answer. I made the decision today to try and get my placement for my Uni degree deferred as my hands just are crap. I can't do a placement like this. I had hoped I'd get an answer and medication. Not to be.

My wonderful and ever so patient Neurologist of 3 years said that this is all beyond him, so I have been referred back to the hospital's Neurologist (that did this assessment) in there movement clinic there to investigate all this further.

Kind of a good step forward to some sort of answers, but still in limbo land. Still nothing to treat my significant hand tremors, jerking, muscle twitching etc, so Uni will have to go for the moment, most likely indefinitely. I can't function in the career I have chosen this way.

So now more waiting for an appointment with the Neuro from the movement clinic. I just hope for answers, in the form of something to stop this.


Okay! Now my question. I am not sure whether to wait this one out or see my GP given the above. Disclaimer -- I will follow this up with my GP if needed blah blah ...

The question - About a week ago I started getting annoying twitching in my left foot. No pain or anything just there, and annoying. Two days later laying in bed trying to sleep my foot started spasming and locking up. It did pass eventually. Since then it feels almost like I have torn a muscle or tendon or something. I am limping slightly from this, so it may explain the hip pain, It's painful to walk on and is now hurting the bone near my hip. I have odeama around my ankle now too, where the pain is. Part of me thinks this has to be all related, but as this is all new to me I just don't know.

I am curious if anyone else has experienced muscle twitching, which later lead to muscle spasms/locking, and then pain in the area? Is that normal? Or have I somehow damaged it without knowing I did?

TIA

Edited by UpsyDaisy, 18 November 2012 - 12:21 AM.


#2 Feral Madam Mim

Posted 18 November 2012 - 04:23 PM

Sorry I haven't, but I hope you get some answers soon.  bbighug.gif




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