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been to neuro

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Ann Ireland
Veteran Member
Joined : Apr 2006
Posts : 511
Posted 8/15/2007 11:31 AM (GMT -7)
He is keeping me on the stalevo, a PD drug but things I have two conditions, one being Dystonia of some kind and also a muscle wasting/myopathy causing the complete weakening. He doesnt know whether either are fast developing or slow lbut I do know that some dystonias are fatal.
I am to have a muscle biopsy and also an EEG and I had a raft of bloods when I was in the hospital.
He is referring me to rehab for whatever they have to offer re counselling about chronic illnesses and NOT a shrink, his dad was a shrink.
He said that the conditions could have been caused by the psychothropic drugs I was on for years and PD on top of both the above has not been ruled out and basically nothing defo ruled in but says he and another neuro are edging towards some kind of diagnosis but with anything neuro it can be very complicated and he says I AM complicated as the symptoms seem to change like the wind and I agree. He is going to try me on a dystonia patch which he says is not as effective as the drugs but safer.
xxAnn
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Stef17
Veteran Member
Joined : Feb 2003
Posts : 1811
Posted 8/15/2007 12:27 PM (GMT -7)
Oh my. Sounds like your doc is doing the best he can to help you out. That's so frustrating to not have them nail down a specific diagnosis. Hang in there. I hope they will come up with something more concrete soon.
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karendee
Veteran Member
Joined : Mar 2007
Posts : 1642
Posted 8/15/2007 12:31 PM (GMT -7)
So Sorry you are dealing with so much! I am glad you have a Dr that is trying to figure out what is going on, at least he does not give up.
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Marie-Claire
Veteran Member
Joined : Mar 2007
Posts : 900
Posted 8/15/2007 11:44 PM (GMT -7)
Love and prayers Ann....glad someone is finally taking your symptoms seriously...hope he keeps digging until he hits it on the nail....meantime, good luck with this new treatment. keep up your spirits....know that we are thinking and praying for you to have better health soon.
Mary
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Ann Ireland
Veteran Member
Joined : Apr 2006
Posts : 511
Posted 8/16/2007 1:11 AM (GMT -7)
Thank you very much for being so considerate and so kind. All of ye are going through equal hell with various complaints. I donno, as I probably said before, there will be a queue at the pearly gates whilst I question first Peter and then God as to why we were made to suffer in this way.
I AM very depressed and my poor twin who HAS Parkinsons is getting the brunt of it. I try to apologise all the time and tell her I am so very tired and ill I dont mean it. She also has been great these past few days helping me put the finishing touches to wallpapering bedroom as the diy is SO expensive and I didnt realise how much I took on. I can't afford what the painter/decorators are charging and the family never even offered to pitch in and most of them are more than wealthy.
I wont be grumpy, its nearly all done now and my new bedroom looks just fab.
It used to be my painting studio.
xx to all with thanks
Ann
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gachrons
Veteran Member
Joined : Mar 2007
Posts : 4527
Posted 8/16/2007 5:42 PM (GMT -7)
Hi Ann So glad you kept trying and are getting some answers. Wonderful your twin is doing your bedroom up will put a little cheer in you I am sure. The therapy sounds great too. Say hi to your twin and keep well.I know that sometimes a person can be a little tired at times and hope your twin is doing good as well. lol gail
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Marie-Claire
Veteran Member
Joined : Mar 2007
Posts : 900
Posted 8/16/2007 11:38 PM (GMT -7)
Ann, Do you still Paint?

I find it wonderfully therapeutic.

Mary
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Ann Ireland
Veteran Member
Joined : Apr 2006
Posts : 511
Posted 8/17/2007 3:31 AM (GMT -7)
just painted the stairwell - the one I fell down and coshed me head against side wall last week and ended in hosp for observation!
nope, dont paint anymore, its gone for the moment, cant sit still or stand for long periods, hope to get back to it with all sincerity, at present the diy is helping keeping the depression at bay and a false belief that all might be right in the end!
xxAnn
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Howlyncat
Elite Member
Joined : Jan 2005
Posts : 24909
Posted 8/17/2007 3:55 AM (GMT -7)
I do wish you all the best in this new TX and I am so sorry for all you have and are going thru

Keep us posted plz

LYN
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