Two Fold- One Poll, And One Question

[zoe ashcraft]

Hi all,

I'm having to look at the full scope of Dysautonomia diagnoses- and am wondering how many of you have the PAF (Pure Autonomic Failure or MSA (Multiple System Atrophy/Shy-Drager Snydrome ???

And I'm also wondering if you all have a map or list of good doctors for Dysautonomia. I'm in California.

Thanks,

zoe

ps. My seizures are lasting for about 12-15 minutes- actually lots of them linked together- are people with Dysautonomia ever at risk of damaging their brains?

[Ernie]

Hi,

I have POTS and NCS.

Sorry, I don't know any of the doctors in California.

[Sunfish]

hi zoe -

i need to get off the computer for the night so am going to keep this super short for now, but a few quick things:

1. i have no personal experience with any doctors out west - california or otherwise - but if you haven't seen it already the direct link to dinet's physician list is: http://www.dinet.org/physicians.htm.

additionally, as listings generally vary a tad bit from group to group, there are two other listings i'm aware of:

NDRF (national dysautonomia research foundation): http://www.ndrf.org/physicia.htm (link should take you directly to the physician listing; if not the listing is titled "NDRF Medical Network" on their main website)

American Autonomic Society: http://www.americanautonomicsociety.org/ ("Physician Referral Listing" is toward the middle of the links along the left side of the page; the way their site is set up keeps me from being able to give you the direct link)

i'll be honest with you that, in general, the autonomic specialists have tended to be a bit stilted geographically such that there have been very few west of the mississippi. that said, i have heard some people in more recent years report good experiences with physicians out west (california & elsewhere).

2. i do have a form of autonomic failure that is also referred to as progressive autonomic neuropathy. for all but the most stringent purposes it's considered synonymous with PAF (aka when i have appointments with docs, including top autonomic specialists, the diagnosis box that gets checked off is "Autonomic Failure (PAF)". as someone who has been pretty active on the forum over the years and who, while i'm quieter at the moment, still reads just about all the posts, i can tell you that while there are a few, there are not many on the forum with PAF. to my knowledge we have never had anyone participate who has MSA/ Shy-Drager (though i do recall one or two people who had family or friends with the diagnosis); i do know that dinet has a few more members with the diagnosis who are not necessarily active on the forum (as membership on the forum is separate from membership with DINET itself), though there are still very few. while it is not the case for PAF, for those with MSA/ SD there is another organization focused more specifically on that diagnosis.

all that said, having read your posts & some of your updates, i'll offer my non-medical opinion (which i realize you didn't ask for!) while i would certainly agree - if for no reason other than your seizures/ seizure-like episodes - that you do seem to be dealing with something more than "just" POTS &/or NCS (as if those aren't plenty for anyone!), i haven't heard/ read anything that seems to indicate that you're dealing with PAF or MSA/ SD either. for what it's worth i'll also through it out there that many or perhaps most of the autonomic specialists, when really pushed, will acknowledge that the currently-accepted diagnostic categories are far from perfect and that, as such, a good number of individuals who most certainly have autonomic dysfunction do not necessarily "fit" into a more specific diagnosis/ category at this point in time. i would be happy to ramble on further but for now will leave it at that .

3. now to try to address your question about the lengthy seizures, brain damage, etc. first of all, based on what i've read/ heard of what you're dealing with (from your posts/ updates), i don't think you're probably having what are technically seizures by the technical definition. that does NOT mean that i think you're not having seizure-like episodes and/or that they aren't as horrible to deal with and/or as real, etc.....what it does mean is that the neurological risk that would, by definition, come with lengthy epileptic/ neurological seizures as they are technically defined is not the same. it's more than i have time/ energy for to explain here but while it is certainly not impossible for someone with any type of dysautonomia to have a co-occurring seizure disorder, by definition seizures aren't a part of dysautonomia. that said, there are seizure-like episodes that some of us with dysautonomia can & do have that - to the untrained, at at times even the trained observer - look identical to "true" seizures. these "convulsive" seizures (which i've heard named in several different ways, i.e. convulsive seizures, cardiac seizures, autonomic seizures, etc) don't originate in the electrical circuitry of the brain as "true" seizures do but are instead a result of diminished blood flow to the brain. that's the short version. and back to your question, if these are the type you are having then they are actually not as risky as "true" seizures of the same length would be neurologically speaking. (that is, similarly to with fainting/ syncope, as long as the body isn't forced to remain upright when they're happening.)

hope this helps at least a bit,

melissa