[UpsyDaisy]

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

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.

This post has been edited by UpsyDaisy: 11/02/2013, 06:31 PM

[Paddlepop]

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.

[UpsyDaisy]

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

This post has been edited by UpsyDaisy: 17/11/2012, 11:18 PM

[Natalie26]

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.

[UpsyDaisy]

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

[Freckles]

Oh my, you really are doing it tough ATM! I can't believe that you still don't have a diagnosis. 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.

[creepersgonnacre...]

hope you get your answers soon x

[UpsyDaisy]

Thanks.

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

This post has been edited by UpsyDaisy: 16/12/2012, 08:54 AM

[UpsyDaisy]

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 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!

[~*Amethyst*~]

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.

XxxAmethyst