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Thank you, Brother Rock, for that URL to the UMN webinar.
 
finally got round to listening to the webinar.........a few points of intrest.
it mentioned disability is far worse in pls than als at the baseline.........not sure what that means.
also mentioned that a PET scan can show umn /grey matter inflamation,if this is the case then why dont they use this scan instead of a mri?
i never had a PET scan,did anyone else? did it show inflamation?
as said in the webinar they need to find a marker for pls to make diagnosis easier and also diagnose early so early treatment may be more effective.
actually i think i have answered my first thought.........as diagnosis is a lot earlier in als they dont have significant disability seen in pls on diagnosis 4+yrs from onset.
 
see my post has surfaced from modland.
 
Wiki claims:

"Limitations to the widespread use of PET arise from the high costs of cyclotrons needed to produce the short-lived radionuclides for PET scanning and the need for specially adapted on-site chemical synthesis apparatus to produce the radiopharmaceuticals after radioisotope preparation. Organic radiotracer molecules that will contain a positron-emitting radioisotope cannot be synthesized first and then the radioisotope prepared within them, because bombardment with a cyclotron to prepare the radioisotope destroys any organic carrier for it. Instead, the isotope must be prepared first, then afterward, the chemistry to prepare any organic radiotracer (such as FDG) accomplished very quickly, in the short time before the isotope decays. Few hospitals and universities are capable of maintaining such systems, and most clinical PET is supported by third-party suppliers of radiotracers that can supply many sites simultaneously. This limitation restricts clinical PET primarily to the use of tracers labelled with fluorine-18, which has a half-life of 110 minutes and can be transported a reasonable distance before use, or to rubidium-82, which can be created in a portable generator and is used for myocardial perfusion studies. Nevertheless, in recent years a few on-site cyclotrons with integrated shielding and "hot labs" (automated chemistry labs that are able to work with radioisotopes) have begun to accompany PET units to remote hospitals. The presence of the small on-site cyclotron promises to expand in the future as the cyclotrons shrink in response to the high cost of isotope transportation to remote PET machines "

I know they are pretty rare, you can't just assume you'll find one in your greater metro area.
 
olly, pet scans are more complex and expensive. Not all facilities have the equipment either. So unless there is some sort of positive aspect that they can say that all PLS show something on a pet scan. I do not think it will be a common thing for them to order one.


I am downloading the video now so I can see it, thus cannot interject anything more.
 
just watched this webinar...interesting stuff, and yes I think the reason PLS has more disability at "baseline" is the baseline is 4 years of symptoms. "Early PMS" vs "PLS"
 
Just finished, yes I agree with both Carolyn and Helen. So is anyone here considering being a canadate for the studies?
 
I posted up a thing about why pet scans aren't widely available, but it disappeared into modland. The short answer is that the radioactive injections have to be made fresh, and so pet scanners can only be in a 2 hour travel radius of where they are made.
 
I have contacted the person listed in the webinar ([email protected]) to express interest in participating in the study. I have also brought the study to the attention of my neuro, as it is my understanding that she would have to recommend me as a potential participant. I was not diagnosed until 8/11 so may not be able to meet the four-year requirement, even though I started seeking answers in 2009.
 
Old Dog, just as an interesting tidbit, the first neuro is the one I see at Mass. General for the Dex trial. I like him alot, even if he still hasn't brought me lunch! (my joke to him...)
 
Hi

I saw my neuro on Friday and we discussed the possibility of me having a PET scan. While we have numerous PET scanning machines in Australia, none of them apparently have the capacity in terms of software, or access to appropriate 'pharmacology' (the radioactive isotopes beky refers too I think). I'm thinking of going to Singapore in a few weeks to get it done. My neuro is just checking it all out for me and making arrangements. My neuro called it an 'FDG PET scan'. Using this term together with PLS, i did a search this morning and found some interesting stuff.

Doubtless, I don't really know what half of it means as I don't have the experience so many of you do, but I'm going to have another read and if I can work out how to attach it to a future post I will. It looks promising.

Lilly
 
Just posted - gone to moderation. My neuro calls it an 'FDG' PET scan.

Lilly
 
Thanks, Helen. It's unlikely that I would be able to travel to Mass. I think plans are to have neuros at ALS Clinics at several locations throughout the country do testing and submit the results. It's good to know that someone who understands the frustrations of MND thinks highly of one of the doctors involved in the study.
 
Hi All. I'm a long-time creeper (teen-speak for benign cyber stalker), but after reading this thread, I'm feeling compelled to break the ice and join the conversation. (I hope you'll have me:) )

I also viewed the webinar and found it very informative. I especially liked the idea that there might be a pharmaceutical light at the end of our PLS tunnel. I discussed the possibility of trying dalfampridine with my neurologist, and to my great surprise, he agreed that it might be worth a try. His clinic will be included in the proposed study, but since my walking is now very precarious (at best!), I'd rather not wait. So now I'm waiting to see whether my insurance company will pay for the medication...it's very pricey! It's not likely, but I'm an optimist at heart, so I continue to be hopeful. I'll keep you updated.

Cheers:)
 
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