A distinct neuromelanin magnetic resonance imaging pattern in parkinsonian multiple system atrophy - bmcneurol.biomedcentral.com...
"Our findings suggest that simple visual inspection of [neuromelanin, NM] in the [substantia nigra, SN] and [locus coeruleus, LC] may easily distinguish PD from MSA-P patients, even in early stages. PD patients have a specific imaging pattern that contrasts with a normal NM pattern in the majority of MSA-P patients. "
"A post mortem study of neuropathologically-confirmed MSA-P showed that most patients were initially clinically diagnosed as PD and in half, the diagnosis was later changed to MSA [2]."
The study authors report this imaging technique can distinguish between PD and MSA-P at an earlier stage.
There are clinical trials enrolling or soon to be for MSA, but of course people are only going to consider doing the trial if they think have it.
One is for gene therapy for GDNF and it is only open to people with MSA-P, not MSA-C.
The other is a Phase 2 for ATH434, which Alterity has stated will begin towards the end of this year.
There are a couple of others that are ongoing and I don't know if they are accepting more participants or not - one for Sirolimus (aka rapamycin) and another is for Verdipastat.
Thanks for the info, Rhyothemis. I don't believe my husband would be interested in any trials, MrFUS or DBS, at least for now as he is a relatively "newbie" PwP. He is not very daring, he just doesn't like to take risks. I, myself, lost faith in trials.
I have not been diagnosed with with PD or MSA. My father was diagnosed probable MSA-C. MSA is not supposed to be hereditary, but I have had all the prodromal symptoms - some have gotten better with CoQ10 (as MitoQ or ubiquinol), B vitamins, and some other supplements. He may have had an ataxia. My daughter suffered neuroleptic malignant syndrome from Reglan - this is quite rare and seems to indicate a problem with dopaminergic signaling. I have PDD-NOS, a form of autism.
If I knew for certain I had a terminal illness I might go for a trial. OTOH I saw a presentation on familial MSA in Japan that seems to be caused by genetic CoQ10 deficiency that discussed a clinical trial which is just finishing up (no results yet). There were of course people in the trial that the researchers knew had the mutant gene and were given a placebo. This was very troubling to me - I don't know what a good solution would be. I think I would have preferred a long term trial in which people who had no symptoms but had the gene were given CoQ10 supplementation to see if it could prevent or delay onset.
Of course, the GDNF trial has a placebo group and they get a sham surgery. But if I had MSA-P I might do it just to get a chance at the therapy - it's not like CoQ10 which is readily available and quite safe to use.
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