Hi I was wondering if you could help me clear up something.
When diagnosed I was told it was parkinsonism by the neurologist then in my letter from the consultant it says parkinsonian syndrome are these the same things meaning it could be idiopathic or one of the other types (Umbrella term)?
Thanks Trev
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Also at the bottom of the letter it says *In fact some of our young onset Parkinsonian syndromes do very well with Madopar* I seen a movement disorder nurse specialist recently and she says she thinks that I only show symptoms/signs of Idiopathic Parkinson's.
Hi! Yes, that is my understanding. My Neuro also used the term Parkinsons plus syndrome. I have been on Sinamet for 4 months without improvement and am now coming off it. I may have a Dat scan in the future but at present dont have a specific diagnosis. Good luck - some of these diseases take months or years to diagnose.
I was told it can sometimes be drug induced Parkinson's, but tests have shown that I have all the signs of early onset disease. I have suffered now for six years. I suggest you push to have an MRI scan to oubliette check, even privately.
My cynical answer would be that they probably have no idea because the diagnosis is mainly a descriptions of symptoms rather than a finding of specific pathology! It would be a good idea to look at the websites b12deficiency.info (look at the videos of people with major neurological symptoms who remained undiagnosed including a doctor who nearly died). B12 deficiency can cause the symptoms of Parkinson's. Also Colin Potter's excellent website fight-parkinsons.org where he documents how a cocktail of vitamin pills (all research evidence backed) helped him to get rid of his symptoms and, eventually, to come off medication. More recently, Colin has been to a neurologist in the US who has found (through DNA testing) issues with his body's metabolysis of certain key nutrients including B12. My partner's symptoms have improved dramatically through taking high dose omega 3, vitamin D3 and B12 as the methylcobalamine sub-lingual variety. It seems that he also has an inability to break down key nutrients. He has had to reduce his ropinirole after he improved a lot. Exercise is also key. I hope in the near future the treatment will be DNA and blood testing for diet and toxicology issues, then dietary and exercise therapy to help and far less need for medication. Good luck.
'Idiopathic' simply means they don't know the cause of the symptoms. They look at a symptom or cluster of symptoms and if you have enough of them to make them believe you have a certain disease, then that is what they call your disease but they don't know what caused it. If, for example, you had used a certain recreational drug known to cause PD and you got the symptoms, they would probably call your condition 'Parkinson's due to xxx', not 'idiopathic'.
There is much confusion over idiopathic Parkinson's, parkinsonism, Parkinson's plus and atypical parkinson's.
Idiopathic Parkinson's is Parkinson's of unknown origin and it is the standard Parkinson's and is L-dopa responsive.
Parkinsonism is caused by a known drug or pathogen. In the early 1980's a bunch of junkies came down with parkinsonism because they injected tainted synthetic heroin with had the by product MPTP. MPTP is converted in the brain into MPP+ (a herbicide known as cyperquat - it's related to paraquat) by the MAO enzyme. Hence MAO inhibitors inhibit the MAO enzyme thus preventing the degradation of striatial dopamine. There was a good documentary about the MPTP/parkinsonism syndrome online called 'Case of the frozen addict' and it is not available on youtube. A BBC sequel called 'Awakening the Frozen Addicts' is online: youtube.com/watch?v=ZhwMOQc...
As for parkinsonism there is also a case of a 22 yo lab assistant who got infected with 10 mcg of lipopolysaccharides from the cell wall of the Salmonella Minnesota bacteria and within 6 years the toxin destroyed here substantia nigra (and she had L-dopa responsive parkinsonism - the MPTP paralyzed junkies also were also L-dopa responsive).
The terms 'parkinson's plus' or 'atypical parkinsonism' are synonymous terms. They refer to the 'Parkinson's like' syndromes with are similar but different that idiopathic Parkinson's. The diseases include: Multiple System Atrophy, Progressive Supranuclear Palsy, Dementia with Lewy Bodies, Corticobasal Degeneration , and Vascular Parkinsonism. In the following article they include drugs and they are included in the category 'atypical parkinsonism'. Usually, atypical parkinsonism diseases, in particular PSP, MSA and DLB have little or no L-dopa responsiveness:
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