Jump to content
15 replies to this topic
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) .
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users
The baby found abandoned in a Sydney drain may have been alone for up to six days without being fed, leaving many asking how he could have survived.
A child's excitement at Christmas time is a beautiful thing, but one dad ponders whether his toddler daughter is getting into the festive mood a bit too soon.
A new experience is radically altering men's views of childbirth.
Italian police have placed 12 doctors under house arrest on suspicion of promoting baby milk formula over breastfeeding.
Cara Simmons arrived at work to clean a large and beautiful house in time for a party planned for that evening. It was soon hers.
Every now and then your child does or says something that is truly memorable.
A few weeks ago, some dear friends of mine had their first baby. As the proud dad texted me a picture I had to fight the natural instinct to say “Enjoy every moment!”
Footage of Australian babies and children sleeping in their bedrooms are among the images on a Russian site showing live feeds from thousands of homes and businesses around the world.
Was there really a man who was actually there by his wife’s side as she laboured and gave birth to his child, all while he was making what he perceived to be meaningful eye contact with a midwife?
Tantrum Trolls are a small but growing species of predatory bottom-feeders who delight in picking on parents at their most vulnerable.
The death of children, siblings, and parents has long term impacts on the rest of our lives.
In a bizarre bid for relevancy, Former Opposition leader Mark Latham has deduced that because one female journalist had this week light-heartedly thanked antidepressants and caffeine for getting her through a medical degree while raising two small children, that ergo, all 'inner-city feminists' are selfish harridans who despise their offspring.
We have a beautiful seven-month-old son, and his allergy rules our life.
A transgender man who breastfed his first baby - despite having his breasts removed as part of his transformation from female to male - has now had a second child.
A Canadian couple were slammed with a million dollar medical bill after their daughter was prematurely during their babymoon.
Australia?s No 1 selling car is now available in a Sports model and we have 5 to give away to some lucky Essential Baby families.
One in every five dollars spent at supermarkets goes on cigarettes or junk food, according to industry data.
There is no doubt mums have a right to continue breastfeeding after they have returned to work, but one teacher in the US has taken it to the extreme.
She looks him up and down and then touches his chin, but baby Lindsey still isn't sure this clean-shaven man is her dad.
We were green and uninitiated, perhaps a little naïve when it came to the favourite toy responsibility.
Medical experts say intense fitness routines can be done safely during pregnancy - if the mums-to-be follow some guidelines.
Fans followed every step of her on-screen pregnancy in Offspring, now Asher Keddie is going to be a mum in real life too.
Are our hopes, dreams and expectations for our children what they really need?
Before even giving birth, Katie Myers' maternal instincts warned her something was wrong with her baby.
We have 4 family passes to give away to see Disney Live! presents Three Classic Fairy Tales, touring Australia this December/January.
Got bored kids? Quickly find the best activities for kids wherever you are in Australia with the Essential Kids app.
Top 5 Articles
Australia?s No 1 selling car is now available in a Sports model and we have 5 to give away to some lucky Essential Baby families.
To celebrate the release of PADDINGTON, we are giving five lucky winners the chance to win a family pass to the exclusive Australian Premiere in Sydney on December 7!
Some dads-to-be don't miss a beat when their partner is pregnant; others struggle with a range of issues and can become withdrawn, right when their support is needed most.
Katharine and Kris Camilli devised a clever trick to immortalise their family and friends' reactions to their exciting pregnancy news.
"After 30 years on television, I had become what I despised: a painted doll who spent an hour a day and close to $200 a week putting on a mask."
I am secure, confident and strong, but the responsibility of protecting my children can almost bring me undone.
There are so many ways in which parenthood changes us as women, but one of the most noticeable, for me, has been the changing state of my emotions.
Baby Maia was conceived against the odds, only to find she was sharing a womb with an ominous "foreign body".
They say dog is man's best friend, but this playful pooch seems to have chosen a jumping baby as her number one buddy.
New paernts can get frustrated when their newborn gets fussy and can't settle down. When you're feeling overwhelmed, try some of these simple tips to help soothe your baby.
The data-lovers at nameberry.com have been at it again – this time, they’ve discovered the names that are continually rising up the ranks, ready to take out some top spots in the next few years.
Ideally, you want to give food that isn’t expensive to make, isn't too difficult to create, and freezes well; stews, bakes, soups and pasta sauces are perfect.
Rebekah DiMartino is going through a break-up. She even wrote a farewell love letter. But it's not to her husband.
In a cruel twist, Carla had been breastfeeding and perimenopausal at the same time. But she's far from the only one to go through menopause early.
Some pregnancy products come to market and are just awesome. Others just leave you scratching your head.
Busy restaurants can be forgiven for getting food and drink orders mixed up from time to time, but not when the confusion leads to a two-year-old being served an alcoholic cocktail instead of the child-friendly beverage they ordered.
Julia Morris has spoken about the devastation of suffering a miscarriage while on an international flight.
A US mother is home and tending to her new baby less than a month after surviving without a pulse for 45 minutes.
Thinking about a tropical babymoon but have nothing to wear? Here are some great swimwear and beach cover-up options for mums-to-be.
Pieces of sharp metal have been seemingly deliberately placed in rubber matting and across equipment at a kids' playground.
How many weeks til Christmas?
Get the "Santa" shopping done without the kids in tow.