Focused ultrasound

[michaela13]

Well, sadly,I was turned down in being part of the clinical trial for focused ultrasound. Since June I've been believing I would be part of this study, they even gave me a date for the procedure, but it wasn't to be. I told you that I'd inform you of my results. Now where do I turn? DBS? My neuro doesn't think DBS will be so good for me because my symptoms are mostly nonmotor. But I cannot walk without sinenet. And diskenesia is so bad.

[hanifab23]

what are your symptoms

[michaela13 in reply to hanifab23]

I have every symptom there is except for a resting tremor. I also never lost my sense of smell. I'm taking 1and1/2 25/100 sinemet every 3 hours (more and less). (7 pills) diagnosed March 2011 but started having symptoms 2011.same time breast cancer.

[Hikoi]

What a disappointment.. the other options could be apomorphine continuous infusion or duodopa if it has been approved for use where you live.

DBS is mostly for tremor. Do you have a tremor - if not I'm curious what were they going to help with the ultrasound? Did the explain to you?

[michaela13 in reply to Hikoi]

No external tremor

[michaela13 in reply to Hikoi]

It was supposed to help the dyskinesia.

[PDDBSwife]

Like all trials, very specific requirements are needed. You do know that it's an ablative procedure; meaning it 'permanently destroys' a tiny area (much like ablative DBSurgery of old - MJFF had it). Doesn't mean it's a bad thing; it's just more invasive than DBStimulation(now) whatever it says on the packet; MRgFUS (focused Ultrasound) leaves a permanent mark, whereas DBS can be undone. It's hair-splitting really

What Hikoi says is right though; DBS is really for motor symptoms. That said, dyskinesia is the by-product of accrued levodopa, and the only way to stop those is to drastically cut-down on L-Dopa which you can ONLY do with DBS. Did your Neurologist suggest you try out for this trial?

I suggest a consult with another Neurologist in a different area - second opinion.

[p-oui]

Michaela, my heart goes out to you. I was so happy to hear that you were getting in the clinical trial and it did sound promising based on my reading. I want to share another trial that is supposed to go into Phase II early next year, 2017. It is a cancer drug called Nilotinib. michaeljfox.org/foundation/...

I have posted about Nitlotinib and the first study they did, which was just a safety study on about a dozen people with advanced PD. It is safe so they go to phase II but what is amazing is the results people experienced while taking Nilotinib. It raised hopes for many. Please check this out.

[michaela13]

There's also M13 which is in a clinical trial now. It eats up the bad stuff in Parkinson's Alzheimer's and ALS.