Rest PEM?

[duncan]

I think I also may have confused the Rochester Winter description with that of the NIH in Bethesda year round...

 

[JohnCB]

In your discussion of Rochester's winter, you forgot the danger of being trampled by herds of woolly mammoths.

I missed the mammoths, but on my first visit in January 1980, I got the rental car from the airport to the hotel OK. However getting across the car park to reception, I well remember quite literally falling flat on my arse twice as the ice layer had repeatedly partially thawed and refrozen to Olympic skating rink standard. I learnt to love some of the American winter traditions, like turning up the hotel heating so high that they have to serve your beer in glasses kept chilled in the freezer.

 

[Gingergrrl]

@Gingergrrl , I do not.

No worries @duncan and I knew it was a long shot and am asking everyone I know (so I can get as much info as possible in advance of treatment.)

However, one of the individuals I reached out to has co-authored a book called "Channelopathies of the Nervous System". Perhaps calcium channelopathies are covered in that? His name is Dr. Robert Griggs. Also Dr. Richard Moxley (also with U of R) seems to have worked with the NIH on channelopathies that include calcium, chloride and sodium channels. So perhaps U of R may be worth looking into. Have you checked clinicaltrials.gov?

Thank you and I will Google Dr. Robert Griggs and Dr. Richard Moxley. I am on the wrong coast for U of Rochester but maybe they know of other referrals. Does clinicaltrials.gov have something with calcium channelopathies? Am just curious if you mentioned them b/c you knew of something?

Better yet, just do like I do, and simply email/call.

I am planning to e-mail the authors of some articles... if I ever get that far! I did that once before (re: another issue) and actually had one of the authors respond and we had several e-mails back and forth. At that time I did not know about the auto-antibodies yet and this issue is much more important. It is a great idea, thank you!

 

[duncan]

Clinicaltrials.gov is run by the NIH and is a sort of database of studies and trials. I think most have NIH involvement at some level, but not sure about that.

It has a search function. You would expect some studies will be dealing with all the different types of channelopathies: calcium, sodium, potassium, etc, but I did a quick search and did not come up with anything. There were nine channelopathy studies noted, though, so maybe it is covered there.

I would expect Academia to yield some experts; the trick is finding the right individuals at the right institutions - as I am sure you frustratingly know.

 

[Gingergrrl]

It has a search function. You would expect some studies will be dealing with all the different types of channelopathies: calcium, sodium, potassium, etc, but I did a quick search and did not come up with anything. There were nine channelopathy studies noted, though, so maybe it is covered there.

Wow, thanks for doing that and I appreciate it!

I would expect Academia to yield some experts; the trick is finding the right individuals at the right institutions - as I am sure you frustratingly know.

Am sure there is someone in academia with this interest in the U.S. and it is on my long to-do list! I have a local neuro and pulmonary doc now who are planning to treat me, but it is not their main area of expertise, and am still curious if there is someone in the U.S. (who actually treats patients) where it is. I know it is all trial and error anyway and I will be a guinea pig but am still trying to find someone who may really know this issue.

ETA: I just Googled the two doctors that you mentioned in an earlier post (Robert Griggs and Richard Moxley) and they both seem to research muscular dystrophy and myotonic dystrophy (?) but I don't see anything re: calcium channelopathies. I am going to compile a list of all the names I have been given and write a brief e-mail re: my situation in case any of them have any contacts to refer me to. Thank you again.