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My rollercoaster ride ...

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#1 UpsyDaisy

Posted 16 November 2012 - 10:33 PM

EDITED -- This thread is a little old (we'll Nov 12' so not too old laughing2.gif) but I add to this rather than a new thread original.gif Thanks Xx


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.

Edited by UpsyDaisy, 11 February 2013 - 06:31 PM.

#2 Paddlepop

Posted 16 November 2012 - 10:57 PM

I have been waiting for you to update with the results of your neuro appointment this week. I'm sorry that you are still waiting for answers. I hope that the wait to see the hospital neuro isn't too long. At least your regular neuro has been smart enough to say that your case is beyond him and to refer you to someone more knowledgable.

It's a shame that you need to defer your uni prac placement. You sound like you really enjoy your nursing studies and it would have been great to actually use your knowledge and skills.

Fingers crossed that a diagnosis isn't too far away. I hope that you can find a way to ease the pain of waiting.

#3 UpsyDaisy

Posted 17 November 2012 - 11:18 PM

Thanks Paddlepop. My ideal and very much hoped for result was answers and medication. However, yet again it's all complex. I agree with you - I am glad my Neurologist did what he did yesterday. He was very helpful over the years, and never just gave up. As for Uni, I suppose I have to be realistic. It's not at all what I want to do, but realistically I can't find another way around all this. Thanks again for you help and support - that extends to your DH too. I will update you when I see the new Neurologist and fingers crossed some answers, if not, something to stop the symptoms would be just fine for me LOL. Not to be for the moment.

Thanks original.gif

Edited by UpsyDaisy, 17 November 2012 - 11:18 PM.

#4 Natalie26

Posted 20 November 2012 - 10:12 AM

I am sorry that you were unable to get any conclusive answers or medications.  At least your Dr has referred you back to someone who may be better equipped to help you out.

Good luck.

#5 UpsyDaisy

Posted 21 November 2012 - 06:23 PM

Thanks. I been to the GP today. My muscle twitching in my right ankle that lasted 2 days, and ended up causing a spasm and locking up when in bed, ended up sore and swollen. Apparently the spasm has damaged my tendon. He checked me over and I am also hyper reflexive and have clonus. He also said I have increased muscle tone. None of this has shown previously so all very new.

GP said to let the new neuro's know about all this and he feels I'll get a diagnosis. So now just to wait

#6 Freckles

Posted 24 November 2012 - 10:12 AM

Oh my, you really are doing it tough ATM! I can't believe that you still don't have a diagnosis. sad.gif It's bad enough going through a process like this with a diagnosis. I hope that your next visit, to the hospital neuro, is able to give you more answers. hhugs.gif

#7 whydoibother

Posted 04 December 2012 - 06:30 PM

hope you get your answers soon x

#8 UpsyDaisy

Posted 16 December 2012 - 08:52 AM


I am still waiting for my appointment and will be for a while yet.

Been back to my GP due to continuing problems with twitching and spasms. GP looked up one of my last blood tests and it showed low Calcium, Vit D and corrected Calcium. He was thinking after all these years it may not at all be neuro. related but hypocalcemia. I am familiar with this, and it's signs/symptoms, but wasn't so convinced this was the cause. I had my electrolytes, Vit D, calcium, corrected calcium, liver function, and parathyroid all tested. Got the results yesterday and as suspected - all normal, so back to more waiting.

Oddly on Friday night I experienced a similar experience to what happened when all this started - the complete left side of my face went dead and this time only my left arm, but it was completely dead. Just went to bed, and woke up fine.

Back to waiting and waiting sad.gif

Edited by UpsyDaisy, 16 December 2012 - 08:54 AM.

#9 UpsyDaisy

Posted 26 December 2012 - 11:21 PM

Another update - I've spent late last week trying to fix this, and have some what done that. I called the new Neurologist team to find out if they had my referral (GP's advice). Turns out they did not have it yet ohmy.gif I called my local neurologists receptionist who checked my file and according to them it was sent.

Whilst I was on the phone to the new Neurologist I asked how long the wait was from when they get the referral to an appointment. Guess what - 9 bloody MONTHS!?! WTF!! I have Uni on hold til early next year, meaning I can continue despite not doing my last placement - but after this point I will need to do this placement of 14 days and another 9 weeks all by mid year - like I am now? Impossible!

So, I tell the new neuro I can't wait that long. Nothing I can do. I talk to old Neuro receptionist and she doesn't know either. So now I am back on the list to see my OLD Neuro.

Crappy thing is, despite my old Neuro stuff and the recent dystonia and tremor results. My old neuro has no knowledge of my all over body twitching, increased reflexes, clonus, and increased muscle tone. The fact my foot damaged itself with twitching and spasms, that my toes curl up and it hurts.

So, I went straight to my GP that day and he agreed I can not wait til the end of NEXT year, so sent through all the new clinical findings, and my recent blood results.

Back to waiting to go back to where I started. My issues with tremors, twiches, spasms etc .. and my knee cracks every time I stand - what is with that?? are so bad now.

Plus, after 18 years I am also a single parent to my 3 SN's kids. Merry Christmas to me!

#10 ~*Amethyst*~

Posted 27 December 2012 - 12:09 AM

Wow! You really are doing it tough at the moment. I'm sorry to hear of your waiting list & your relationship breakdown

I sincerely hope that 2013 is a much much better year for you.


#11 Paddlepop

Posted 27 December 2012 - 02:01 AM

The runaround that you are getting with neuro appointments is ridiculous. You need to be seen by an expert ASAP. I will PM you some information that might help you to fast track an appointment. DH has some insider knowledge of how to get through a long waiting list.

I'm sorry to hear that your partner left you. How are you coping without him? What about your children: are they coping without him?

I hope that you can get into a neuro really soon and get a diagnosis and treatment.

#12 UpsyDaisy

Posted 28 December 2012 - 11:02 PM

Thank-you both for the reply's. I have decided to wait til next week and go from there. Despite my Neuro only being at our local hospital once a month I have never had problems getting and appointment ASAP. My GP just looks at me blankly when I ask if he has any idea's as to what is causing all my issues - mostly of recent. I kind of get the feeling he is leaving it to the specialists. Not much more I can do, really.

Thanks Xx

#13 UpsyDaisy

Posted 03 January 2013 - 07:48 PM

Good news. I have recieved a letter from my new Neurologist with an appointment for 4 weeks time. I suspect my old neurologist must have read my GPs letter and fixed this. Otherwise I have no idea how I managed to get in 8 months sooner than told. Very good news and a real chance at answers for me, which also means I'll stop posting and annoying you all laughing2.gif My GP said to me when I saw him, as he had a copy of my old neuro's referral, that it was for general Neurology. This has also changed and is now definitely with the movement clinic.

Hopefully, my next update will be an answer. I can only hope.

Thanks for listening Xx

#14 Paddlepop

Posted 03 January 2013 - 07:53 PM

tthumbs.gif  eexcite.gif  ddance.gif Excellent news!

That must be such a huge relief to have an appointment so soon.

Fingers crossed that the appointment goes well and you get a diagnosis.

#15 UpsyDaisy

Posted 03 January 2013 - 07:55 PM

Thanks for all your support Paddlepop Xx I really hope I can get some answers. Thanks wub.gif

#16 UpsyDaisy

Posted 08 February 2013 - 07:34 PM

I have my appointment Monday with the new Neurologist in the movement clinic. Fingers crossed I get closer to answers. I think, bloody hope lol, that I do.

I will update if and when I know more

Thanks for the support Xx

#17 ~*Amethyst*~

Posted 10 February 2013 - 10:58 AM

Best of luck UD. I hope you get some answers & treatment so you can continue your studies.


#18 UpsyDaisy

Posted 11 February 2013 - 06:34 PM

UPDATE --  Thanks original.gif Appointment took over 2 hrs - with a consultation and another Neuro at the end who came in too.

I somewhat have answers LOL It's as good as I am going to get for now. Confirmed cause is Dystonic Tremor Syndrome in the upper limbs. Something about all that is really rare, apparently and nothing about all of what is happening has a definite answer. My tremors are caused by Dystonia, which is when your muscle contract continuously - but in my case causing tremors. Dystonic tremors "can" be a condition of it's own - we'll it is - a Neurological Movement Disorder. However, it's mostly associated with another condition, almost like a symptom, of a bigger condition. At this stage they don't know.

There getting all my reports and results from my local hospital faxed to them. They need to check a few things and make sure my MRI was done a specific way or something - if not it has to be done again. I have some pathcare forms here as there also checking for a couple of metabolic conditions. I have also been given a script for some medication to help my tremors, or at least start me on for now.

I asked what this means for my nursing and as suspected I will never be able to do things like give injections. The Neuro tried to reassure me I could do PCA or AIN work etc. but this means Uni is finished.

They also need to continue to see my indefinitely, and I have to deal directly with them in Melbourne - not locally. They now need to monitor me, as she said it could very well become a "condition" in time - she used in 5 years time as an example. She said the fact I could be facing a condition that will mean I cant do Nursing in 5 yrs or whenever (but within the next few years) that continuing Uni might end up being for nothing anyhow. She didn't say to "quit" in those exact words, but made it pretty clear that it's not possible anymore.

Apparently, I am a little bit of a puzzle - surprise, surprise LOL But they don't mind this sort of thing as it's interesting to them, apparently LOL Not me though Hehe! She has video taped my tremors as she was to show a team of Neuro's to see what they think. Oh, and I don't have clonus - but I do have increased reflexes and something about muscle tone (either increased or decreased - not sure)

So, assuming bloods come back okay, reviewing of my previous scans are okay. It's literally just a review, wait and see indefinitely. BUGGER!! Although at least I know now that this could take a few years. And also medication to help my tremors is a bonus too original.gif

Thanks so very much for all the support, idea's, help, and even just putting up with my posts in here LOL I do genuinely appreciate it <3

Thanks Xx

Edited by UpsyDaisy, 11 February 2013 - 06:35 PM.

#19 Cat©

Posted 11 February 2013 - 07:43 PM

Im glad you have finally found someone who will take you seriously and pull thier fingers out and try to help!

Im sorry you dont have all the complete answers for your future, but hopefully they will not come to fruition and it will just be the dystonia. I really hope!

Thats sad about your uni, I guess you *could* always continue it to give you something to hang on to, and do to keep your mind occupied? then again with the kids it may just be more stress to add to your workload.

Pm me if there is anything I can do original.gif

We have tremors and myoclonus, similar but not as nasty as dystonia can be sad.gif

#20 Therese

Posted 11 February 2013 - 07:49 PM

I'm glad that you are getting some answers and I'm sorry that it looks like you can't go back to uni.

Take care of yourself.

#21 UpsyDaisy

Posted 11 February 2013 - 10:06 PM

Thank-you both for your replies. I appreciate it.

Cat - Uni isn't an option, unfortunately. I pulled out of my placement in Dec - due to my tremor analysis results, as I felt I was a danger to patients. For example, I couldn't give needles, remove sutures/staples etc. In order to fully complete my first year - I need to complete this placement. In order to do so, I need to be able to repeatedly perform the above mentioned skills, which I can't do sad.gif If I can't do them. I can't do the placement. If I don't do the placement. I can not continue beyond mid-year as this placement is  a pre-requsisite to the next one's. Its a disaster to be honest. I am going to start another degree and hopefully get credit for the two year I have already done. I have no idea what though. OT sounded great, but fine movements won't work. Not sure.

#22 Cat©

Posted 12 February 2013 - 12:30 AM

sad.gif Thats sucks. Im so glad though that you are considering doing something else. Even if it was just a dream hobby rather than a future career, just something to keep you out there and give you some adut time original.gif

#23 Freckles

Posted 14 February 2013 - 10:57 AM

Hi UD,

I haven't been on for a while but wanted to see what your news was. It's a relief I'm sure to have at least something of an answer, even if they feel it is not yet a complete answer. How devastating about uni though! As a midwife who had to give up work due to my MS I understand how upsetting that is and I really feel for you. sad.gif I"m really glad though that they are taking you seriously and you at least have SOME idea of what is happening.

Sorry to hear about your break up, that must be VERY hard with 3 SN kids and yourself having issues! sad.gif

I hope that things improve with the meds. Look after yourself.


#24 UpsyDaisy

Posted 27 February 2013 - 09:52 PM

Cat - Thanks original.gif I am still yet to approach Uni. I am meant to start again on Monday, but denial this is real works best at the moment. I will definitely do a different degree, even if it's just for something to do.

Freckles - Thanks original.gif I remember when you had to give up working due to your MS sad.gif I appreciate your kind words.

Mini update - I started my new medication and had a massive reaction to it. They call it an opposite reaction, so I had all the symptoms in a severe way of ever condition it treats. It was the worst feeling in the entire life. I never ever, ever wish to feel that way again. I only took on dose and reacted for almost 3 days straight. I had all the symptoms of a heart attack, severe panic attack, lost all muscle strength - couldn't walk, swallow or talk. All the muscles in my face, throat, mouth everything went and wouldn't work. I felt severely sedated, in a state of "sense of doom and panic". My body went into spontaneous symptoms and shut down. I had no-one to help me, no-one to watch my kids and couldn't get to the ER. Despite barely being able to drive - I did so to get the kids to school and dealt with them at home the best I could. I felt horrible and helpless.

I can not begin to describe the feeling when after almost 60 hours it wore off and I felt normal, able to function. I can not ever imagine being able to "emotionally" deal with trying another medication ever again. I would rather the symptoms.

They say I am interesting to them. I am sure they will be interested in my rather unusual and interesting reaction to these meds.

So, that's my update LOL

Edited by UpsyDaisy, 27 February 2013 - 09:58 PM.

#25 Paddlepop

Posted 28 February 2013 - 01:08 AM

Wow, what a reaction to the meds! That must have been so scary for you and your children.

When do you have your next review with the neuro? I suspect that your reaction will make you an even more "interesting" case for them.

I'm glad that you finally have a diagnosis, such that it is. At least it isn't something else like MND or MS. Do they expect the tremors to continue to worsen, or are you such a mystery case that they won't even try to predict what might happen? I suspect it might be the latter option for you!

I'm sorry to hear that nursing is no longer an option for you. What else do you think you might like to study? Just make sure you contact your uni before the HECS assessment date so that you don't get charged for study that don't do.

I hope that you are otherwise doing well with your children, and no longer have to worry about some horrible diagnosis.

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