i have bin dx now for 11 years in november, i was dx with pd and had pd meds for 10 years but few months ago i was feelin my body doin strage movements ,and tryed to tellmy neuro and he would not listern ,so i changed neuros,it was the best thing i did,she agreed with me i need more tests so i got sent to a movement disorder spealist in brummy ,i had bin told orinally after havin 2 datscans i had pd,but i now am told that i have signs of pd ,but signs ot other conditions leadin to bein dx as parkinisum.iam now havin futher tests to find out the added condition ,pd is the main type of parkinisum i was told by neuro ,and there is many conditons branching off it ,hence movement disorders as well,im still waitin for this dx.but recently there has been a few people tellin me that there dx is now bein looked at also ,how can this be happinin to us folks,it does not make sence.im still on all of the same meds i was ,so why do they confuse the mater ,very strange.if ur one of these people who are or have experinced simular probs as me ,i would love to here ur story ,to share with us all.
ali, you make a good point. Neurological disorders all get muddled up . The neuro practioners can only work with the diagnosis they have decided upon based on the most recent tests
My story (as briefly as I can):
Vertigo - prescribed stemetil
benign esssential tremor - stemetil stopped, propranolol prescribed
parkinsonism diagnosed as result of MRI scan- propranolol stopped, DA prescribed
PD diagnosed as result of DaT scan - DA increased
2nd neurologiical condition diagnosed as result of another MRI scan - DA decreased, levodopa introduced
I await with baited breath the next consultation/diagnosis/prescription
I obviously needed to say it twice?
Hi AB and Ali.
Hi AB and Ali.
Thanks for being our latest guinea pigs. Without good folk like you these so-called experts couldn't have 40-year careers on chunky salaries learning and diagnosing nothing.
It has long been said that we understand only 5% of the brain, the other 95% being way beyond human comprehension.
How true that is here! My son is currently doing an MSc in History. If only I could put the clock back I'd strongly advise Neurology.
Ali, I have recently seen my neuro regarding body movements. I have been dx for 11 years and have been on of those people that is unable to take DA's, so Ive been on levadopa for about 7 years now. My movements were a sort of involuntary rocking and swaying and one arm kept doing just what it wanted. My neuro lowered my dose of Stalevo, she said that I might be getting too much of the Levadopa, since then the movements have improved a lot. Ive also just bought a really useful book called The Parkinsons Treatment Book...Partnering with your Doctor to Get the Most from your Medication. Its written by J. Eric Ahlskog MD, he's from the Mayo Clinic. Ive found the book so useful because it covers every aspect of PD and talks about patient and Doctor working together.
Thanks Glenchass for this.
I've read quite a few of Eric Ahlskog's papers (they present PD in a better, though non-unrealistic, light). In one he pummels other researchers who state that dyskinesias are very high after 5+ years of levodopa therapy. He said in most of these cases the problems can be resolved by lowering the levodopa dose (like you have just stated).
When it comes to PD a part of me likes playing the Advocatus Diaboli, so thank you for backing up what I have previously read.
glenchass thankyou for ur post,i will follow up that book
I was dx with PD in November 2009. I have not had any scans just an examination/test (walking up and down, finger and thumb together as fast as you can, nose to neuro's finger etc)by the neurologist who then told me that it was Parkinsons. For the first 12 months I was quite stable on Ropinirol but began to get a 'wearing off' so was prescribed Stalevo. After only 2 tablets I went into a drug induced fit, hospitalised and taken off Stalevo. I was prescribed Selegiline as an alternative and now also take Sinemet, Madopar and Requip. Over the past 6 months I feel that things have moved on rather rapidly, I now use a stick when walking, have resorted to a wheelchair (not often) if going too far and other niggling symptoms which I'm sure you all know about.
I had an appt. with my neuro 4 weeks ago who, after going through everything with me and o/h, advised that she was referring me to another Consultant who specialised in Parkinsons. When I questioned why this was necessary she said that she wasn't sure if i did have PD, or if I did and it was masking another neurological condition that was causing things to escalate so quickly. I have an appt 22 Sept to see both neuros at a joint clinic but until them am left in limbo wondering what on earth is happening to me.
what an appalling situation you are in and hope it gets resolved soon. Will the consultant not refer you for a datscan? It would normally be accurate enough to confirm whether you have PD or not.
Please let us know how you get on at your next appointment.