long absense but back

Ann Ireland

Veteran Member

Joined : Apr 2006

Posts : 511

Posted 2/17/2009 7:10 PM (GMT 0)

Still no dx on the Parkinsons. Twin still thinks I have it. I am 'pill rolling' alot now and the dystonia in the morning is grim. I go into a massive contraction of all muscles and usually shout out, this I think is not done unconciously, the shouting out, I am just flipping fed up of feeling so awful.
My new neuro says my last Dat done a few years ago was not normal and although the recent one is in at the secretary I have to wait some six months for the appraisal for thats when I have the neuro appointment.
I am more ataxic, dystonic than Parkinsons like my twin but my motivation has plummetted and so has my depression.
My fingers press into the palms of my hands too.
If I see something exciting on the telly I go into dystonic overdrive and my arms and legs go in all directions in dystonic involuntary movements.
I am sick of five years of this, no complete dx on the lupus but defo on the sjogrens and no dx on the neuro stuff.
xAnn

yekkimo

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Joined : Apr 2003

Posts : 1283

Posted 2/18/2009 1:12 AM (GMT 0)

Ann,Waiting 6 mos. to see a neuro is nothing short of ridiculous.I hope you get it sorted out soon.Wishing you the best,and thinking of you.Ed

Ann Ireland

Veteran Member

Joined : Apr 2006

Posts : 511

Posted 2/18/2009 4:19 PM (GMT 0)

Ed, to even get INTO the neuro system can take up to two years, be it private or public and people have died in the waiting! We have 11 neurologists in all of Ireland to deal with a population of about 5million people. Checkolovakia has 32 with the same population mass.
If you are a public patient, you just have to wait until your next appointment which is usually six months apart. Forget about trying to get him on the phone, that is frowned upon mega and you are considered a'troublesome' patient if you try to get your man!
I managed to get the nurse and he has said the Prof is writing to me. I dont know what that will say cos that is NOT usual proceedure and might mean I am being ditched! Yep, I am a troublesome patient already for 1. trying to contact him and 2. refusing to see a shrink! The latter is ridiculous. I dont like the breed in any shape or form. I am of perfectly sound mind.
I didnt like this neuro I have to say but choice herre is not an option.
xAnn
any ideas of why my two thumbs stick up in the air frozen when I am relaxed/ do other people have this.
Dont forget have a twin with PD, it couldnt get any worse to be told I have it to. And its not unlikely.

Ann Ireland

Veteran Member

Joined : Apr 2006

Posts : 511

Posted 2/23/2009 9:20 PM (GMT 0)

Tried the Parkinson's nurse at the unit but I didnt hear the phone go when it rang as am deaf. He left a message to go to the GP for the pain and that the professor had arranged an appointment for the shrink in July. That is not ABNORMAL here in Ireland! shrinks get into pain management and stress etc.
Well, I would be less stressed if I knew what was wrong with me!
I really really doubt that a shrink can actually diagnose psychiatric movement disorder, like they used to say of poor ole war 'shell shock' victims that they were 'malingering' to get out of being sent back to the front!
If you are jigging and jerking and have dystonia, and ataxia and chorea, and your twin has parkinsons I doubt its either muchausen, malingering or whatever, who would want it and I do not!
Tried to get my GP to ring the consultant, she wouldnt even though I made an appointment to ask her.
I dont know how you get to 'God' who seems to hold ALL in the palm of his hands, that is the bloody consultant.
I am so desperate.
On top of which the vomiting bug I picked up at the hospital after seeing the rheumy where he is overseeing my autoimmune diseases has flattened me and my sjoggies has flared as has my crohns.
Twin who has parkinsons is writing her life and loving the process.
xAnn

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