Jump to content

Dystonia?


  • Please log in to reply
15 replies to this topic

#1 UpsyDaisy

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 sad.gif

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 sad.gif This just sucks.

TIA

#2 feralgreenthumbs

Posted 29 November 2012 - 06:04 AM

No idea, just wanted to say that sucks sad.gif . 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?

Good luck!

#3 Maple Leaf

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.

#4 UpsyDaisy

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.

#5 Riebe

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 wink.gif ).

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,
Riebe

#6 UpsyDaisy

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 sad.gif

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.

#7 Maple Leaf

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.

#8 UpsyDaisy

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.

Thanks

Edited by UpsyDaisy, 01 December 2012 - 01:54 AM.


#9 Therese

Posted 01 December 2012 - 08:00 AM

I hope you can get some answers soon UpsyDaisy.

#10 Superman+4sisters

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

#11 unicycle

Posted 01 December 2012 - 09:56 AM

In the interim, can you get in to see a neuro phyiotherapist?

#12 Charlie & Lola

Posted 01 December 2012 - 11:58 PM

Hi UpsyDaisy I am so sorry you are experiencing this sad.gif

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.


#13 UpsyDaisy

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 original.gif

Edited by UpsyDaisy, 02 December 2012 - 11:44 AM.


#14 Charlie & Lola

Posted 04 December 2012 - 12:19 AM

I hope you get it sorted soon xxx It must be very difficult.

#15 Ruby Gloom

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.

#16 ednaboo

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

 

Special offer: The Baby & Toddler Show 2014

At The Baby & Toddler Show, you?ll find everything you need to get ready for your new arrival and guide you through the early weeks and years of parenting.

An open letter to Tony Abbott: please salvage our super

We face financial ruin, but most of us don?t realise it. If we don?t act together to salvage our superannuation, I have no doubt the new GFC will be the Girls? Financial Crisis.

'I'm happy to know I'm changing lives': surrogate mum of two

I know that once the baby is born, I will focus on the gift I have given, and watch the parents with their new child. I can't wait for that day.

Birth trauma and the issue of informed consent

There is a perception that women should just be happy they have a healthy baby in their arms. But for women who experienced birth trauma, there's a lot more to it.

Tips for managing pollen allergies and hayfever

They're simple tips, but they can have a big impact on those who suffer from hayfever and pollen allergies.

Ada Nicodemou shares tribute to her stillborn baby

Just over one month since Ada Nicodemou and her husband lost their second son, the Home and Away star has shared a touching poem for her baby.

Mum causes stir breastfeeding on train

?To the woman breastfeeding her kid on the train. Seriously! On the train?" began the letter of complaint.

10 things they don?t tell you about being pregnant

As I slowly waddle my ever-changing pregnant body towards the finishing line of my due date, it?s becoming increasingly clear there are a lot of things they just don?t tell you about pregnancy.

Overcoming a fear of the dark

A toddler's fear of the dark is very normal, but there are ways parents can help children through this stage in their development.

Kids, TV and movies: how young is too young?

It seems you don't have to throw the TV and iPad out the window - it all boils down to moderation, supervision and interaction.

Video: Baby's first birthday is a special day for mum, too

?A baby?s first birthday is also mum?s first birthday.?

The day Supernanny came to tea

Prince William's favourite celebrity child trainer Jo Frost puts Bryony Gordon and her toddler through their paces.

Tales from the homefront

When you're at work you sort of assume that your house is basically just sitting there quietly doing nothing until you return. However, since spending my days at home, I've learned this couldn't be further from the truth.

The words I hated hearing as new mum

It was less than a week after my son was born that I first heard it - from my mother.

To the pharmacist who sold me baby formula

On the rare occasion I catch sight of you at school, or around town, I think back to our earliest exchange. I?m sure you have no recollection of it at all.

Babies may benefit from autism therapy

Children showing signs of autism don't usually receive early intervention until well into toddlerhood or later, but a new study suggests infants with symptoms of the developmental disorder might benefit from therapy from as early as six months.

Knatalye and Adeline born with an everlasting bond

Knatalye Hope and Adeline Faith are a lot like any other identical twin girls, but there is one dramatic difference: they're joined at the chest and shares several internal organs.

The question this dad wishes he'd asked his wife

I should have seen that my wife wasn't the same person I'd fallen in love with, but we were both too focused on simply trying to get by.

Why we should talk about the deaths of the Hunt children

The deaths are too horrible even to think about. Yet we owe it to the children - Fletcher, Mia and Phoebe Hunt - to think long and hard about it all.

Baby dies of meningococcal weeks after vaccine application denied

A six-month-old girl has died from meningococcal disease just weeks after an application for government funding of a vaccine for the most deadly strain of the virus was rejected.

Finding the right balance when playing with your kids

Being too involved in our children?s play and not allowing our kids enough free time for unstructured activities can mean our kids miss out on the value that play offers.

Creative DIY light shades

The Pop Light light shade comes in a flat pack already made - it's up to you to design it as you'd like.

The battle of iParenting versus imagination

Have we forgotten how to be imaginative, resourceful parents?

Why movement is so important for your baby's growth

Letting your child move as much as possible in the early years ? using all senses, engaging in the real world, preferably outside ? will help them grow up healthier, smarter, calmer and stronger.

Download now: Essential Kids Activity Finder app

Got bored kids? Quickly find the best activities for kids wherever you are in Australia with the Essential Kids app.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Special offer: The Baby & Toddler Show 2014

At The Baby & Toddler Show, you?ll find everything you need to get ready for your new arrival and guide you through the early weeks and years of parenting.

Losing yourself to motherhood

While watching your baby grow into a unique little person is exciting and wondrous, the intensity of meeting everyone else?s needs can ever so sneakily overtake your own needs for self-care.

Tearing during delivery: the facts

Almost all women will experience bruising, grazing or tearing after a vaginal birth. Depending on the degree of tearing, there are various treatments available.

6 tips for a day out with a baby and toddler

Outings can be lots of fun with the kids, but there are inevitable challenges. Here's some information about days out to help you be a little more prepared.

Why I invited a dozen people to watch my son's birth

I sent invitations on burgundy scrapbooking paper stamped with a field of poppies, and told each person why I wanted him or her there. I warned that there would be nudity.

Getting labour started: tips for a natural induction

When your baby?s due date comes and goes without so much as a pop - let alone a bang - it can be disheartening. Mums and a doula share their stories of natural inductions.

7 mistakes old hands make with new babies

As I sat across the table from my friend ? me, a seasoned mother of three; her, a brand new mum ? I thought of all the mistakes an old-hand parent can make when visiting a newborn baby.

That's my boy: a dad's diary of the first 4 months

Unbearable anxiety, unspeakable joy, constant exhaustion and bouts of frustration ... The many shocks of first-time fatherhood resound in a dad's diary of his son's early months.

One of the most important things a new mum can do

Finances may not be as cute as a newborn, but with many women?s working arrangements changing post-baby, monetary matters need attention too.

Single, pregnant - and 51

She first became a mum at 49 - now, two years later, Tracey Khan is pregnant with her second child.

Personalised baby gifts

We've scoured the internet to find gorgeous personalised keepsakes and nursery decor to record baby name and dates. They make great gifts for christenings, name days and birthdays! (All prices in AU.)

 

Reader offer

2 FOR 1 TICKET OFFER

For Shopping, For Advice, For Baby & You. Enjoy a special day out with fabulous shopping from over 200 brands, leading parenting experts offering advice on a range of topics, and amazing children?s entertainment

 
Advertisement
 
 
Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.