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Posted 28 November 2012 - 09:49 PM
The title is dystonia because I think? this is what is happening.
Short version - I've had three years of Neurological issues. I received some results from a tremor analysis a few weeks ago and my lovely neurologist has decided this is beyond him and referred me back to the place I had the assessment to see the Neurologists in the movement clinic.
In the meantime any help or ideas appreciate, because my body is declining. Tremor analysis shows my hand/arm tremors are an irregular kinetic and postural tremor. Findings also say I have dystonia. Dystonia is suggested as the cause to my tremors. My body started twitching not that long ago starting in my middle back, then left side and then right foot. After two days of twitching in my right foot it spasmed and locked up in bed. Didn't last long but bloody hurt. Woke sore and swollen. Fast forward to a few days later I saw my GP. He discovered new stuff that wasn't an issue previously. I am hyper reflexive. I have clonus. I have increased muscle tone. He said the twiching then spasm damaged the tendon in my ankle hence the swelling and pain. Two days later my left knee did the same. Tonight my three toes on the same right foot's tendon I damaged are spasming and curling up. My ankle is still horribly swollen and I am very worried about my toes doing what they are. It bloody hurts
GP said this is all connected. I will get a diagnosis once I see the movement clinic, but I am thinking something is VERY wrong. My body is self-destructing as I speak.
Idea's? GP again? Call the movement clinic. I have no idea. Or has nayone experience this sort of thing or have any ideas? Getting slightly desperate now This just sucks.
Posted 29 November 2012 - 06:04 AM
No idea, just wanted to say that sucks . I really hope someone can sort it out for you as soon as possible.
I'd be phoning the movement clinic and seeing if you can see someone urgently, if they can't do that, perhaps see your gp today and get them to phone and really push the issue?
Posted 29 November 2012 - 11:24 AM
I would say this is far beyond a GP so wouldn't even bother with that again. When can you see another neurologist and be back at the clinic?
I would be moving heaven and earth to get a diagnosis. There may be meds out there that could halt or at least help your symptoms and you've been missing them for 3 years.
Find the best brain person in the country and beg to see him/her.
Posted 29 November 2012 - 01:04 PM
Thanks for the suggestion.
I've ended up having to go back to my GP, as he should be able to fast track things if needed. Can't see him til mid next week though. Old Neurologist would take at least 4 weeks to see. My previous neuro. is referring me back to the movement clinic, who are by far the best people to see regarding my problems, even the GP said this. Not sure when the appointment will be as they need to get the referral then send my a letter with an appointment.
Posted 29 November 2012 - 02:03 PM
Hi UpsyDaisy, really hope things get a bit better soon.
It can be pretty upsetting when all of a sudden your body seems to be fighting against itself.
I got diagnosed with Paroxysmal Dystonia 13 years ago.
It took about 4 years to get the actual diagnosis, but that was due to the paroxysmal nature of things (funnily enough my symptoms didn't always line up with the docs visits planned 4 months in advance ).
Movement Clinic is probably your best bet, but i'd be asking the docs there, and searching the internet, for any neurologists who are in your area who are known to deal with either movement disorders, or are who the "difficult" cases end up getting sent to. I've had 5 neuros over 20+ years, and 2 of them have been incredible. The other 3 ranged from disinterested to had to look up the condition in a textbook.
If you are looking for docs in Sydney PM me and i'd be happy to give you recommendations.
Lots of luck,
Posted 29 November 2012 - 05:08 PM
Thanks so much for sharing Riebe. I am sorry to hear about your diagnosis, and the horribly long wait
The hospital I am being referred too is The Alfred in Melbourne. They have a specific movement clinic and Neurologist within it that deal with movement disorders, so I am confident or at least hopeful that it will bring some sort of answers. My previous Neuro. was fantastic and very thorough, but just couldn't work me out as I've had many other issue unrelated to this stuff, or maybe they fit within this puzzle somewhere - not sure. The stuff in my OP was also very new and only been an issue for about 2 months, maybe 3 months. My tremor has been around since the beginning of the year - just progressed to the point I can't do things anymore. I also drop things (not necessarily related to the tremor, have issues with buttons, and putting a key in the front door, even stuff like brushing my girls hair and trying to hold the hair with one hand and brush with the other. It's like they don't do what I want them to do anymore. Again this is a new issue too of 2 - 3 months.
Thanks again for sharing.
Posted 30 November 2012 - 07:43 PM
Op I really hope you can get some answers. The not knowing must be driving you crazy as well as being scary.
Thinking of you.
Posted 01 December 2012 - 01:50 AM
Thanks so much. The not knowing wasn't really a huge issue in the past. I've been glad I had a Neuro. who believed me and never gave up on me, so not complaints there.
I am now almost certain where this is all going and I know the movement clinic Neuro. is the best, so will almost certainly confirm what I am akready pretty certain off. Scary, very scary, but given the time frame on all this bitter sweet. I am now at the point of being driven crazy and impatient, because I know what is coming and stupidly it's not what I had been thinking was wrong all along - very different. Recent "issues", in my opinion, have added pieces of the puzzle that I think have been missing all along. Pieces my GP discovered after I last saw my Neuro. so I don't blame him for missing all this.
Edited by UpsyDaisy, 01 December 2012 - 01:54 AM.
Posted 01 December 2012 - 09:05 AM
I don't have any answers either, about your particular condition. But I saw a gentleman the other week with an extremely unusual skin condition that has all of his doctors scratching their heads.
The man's wife has been on the phone almost continuously, hunting out people who may have had a similar condition, has tracked down someone and been referred to their doctor.
In addition, there was an upcoming dermatologist's conference, and they've invited this man as their 'case study' so they can all put their collective heads together and hopefully come up with a diagnosis and treatment.
At the end of the day, it's going to come down to the individual doctor's experience and passion/determination to find a diagnosis and treatment. If the clinic doesn't have answers, keep looking. It's out there...
I hope you get on the right path soon. It sounds enormously painful and distressing. Some answers would be very welcome I'm sure. All the best
Posted 01 December 2012 - 09:56 AM
In the interim, can you get in to see a neuro phyiotherapist?
Posted 01 December 2012 - 11:58 PM
Hi UpsyDaisy I am so sorry you are experiencing this
Are you on any medications or did you change/start a new medication when these symptoms started? The only reason I ask is that I recently read a biographical novel and the girl in it suffered Dystonia as a side effect of a medication she was prescribed.
Posted 02 December 2012 - 11:43 AM
Thanks. No new medications. One I have been on for MANY years hasn't changed either, and surprising is used for tremors, although it doesn't help it that department, just a coincidence that it also prescribed for tremors. I only just found this out a few weeks ago. GP said all that is happening is related to each other, so just have to wait it out now. Still nothing from the other hospital - hopefully this week.
Thanks for the suggestion. I appreciate it
Edited by UpsyDaisy, 02 December 2012 - 11:44 AM.
Posted 04 December 2012 - 12:19 AM
I hope you get it sorted soon xxx It must be very difficult.
Posted 04 December 2012 - 11:09 AM
I was going to query a reaction to medication too. I once witnessed my sister (while she was in hospital thank god!) have a dystonic reaction to stemetil. It was terrifying to watch and really really hurt her physically.
Good luck OP.
Posted 04 December 2012 - 06:08 PM
Acute dystonia caused by medication would have been ruled out for the op right back at the beginning. Op I have no other suggestions that to go with the team at the tertiary hospital (ie the Alfred) .
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