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#1 Kits

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Posted 18 November 2005 - 03:32 AM

I was so dismayed to find that when searching for "POTS" in WebMD, it asks if I really meant to search for the "Potty"!!!
I submitted a comment that they should have it listed. Maybe if everyone here did the same, other fellow sufferers who are undiagnosed can find the care that they need! If you have a moment, send one in. We searched the site up, down and backwards when I was undiagnosed and if they would have had POTS on there, we would have found it and I would have been treated sooner.
I just really think that the effort is worth it!

#2 wareagle

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Posted 18 November 2005 - 09:39 AM

Just wanted to letcha' know that if you do a search for "dysautonomia" on webmd you will find several links to info. regarding NCS, Orthostatic hypotension, and MSA..along with a couple of other topics. It's not much..but they do have something listed! ;)
When I was originally searching for info. I always used "dysautonomia" or autonomic dysfunction..you tend to find more info. with these general terms.

#3 Sunfish

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Posted 18 November 2005 - 09:59 AM

i'm by no means saying that more awareness, info, etc. isn't needed but will say that there is A LOT more than when i was diagnosed in 97. another difficulty is the confusion/disaccord in naming & definitions even amongst the autonomic specialists. there are many interchangable terms that vary from doctor/research instituation, country etc...i.e. POTS & OI, VVS & NCS & NMH, etc.....that definitely doesn't help

whenever i come across a medical book, dictionary, etc. i check & most now have something...only several years back there was often nothing in relation to dysautonomia...
so....slowly but surely....
;) melissa

#4 Eli6596

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Posted 20 November 2005 - 10:11 AM

Sunfish,
I find the multiple terms for one disease to be annoying. I think that some of the problem stems from involvement of BOTH cardiology and neurology in this field. Each field prefers a label for the same thing. Also, the terminology keeps changing, and it is hard even for health professionals to keep up with the new lingo.

The American Academy of Neurology might be able to suggest guidelines which most neurologists might follow for terminology, but then the cardiologists might never see the guidelines or ignore them.

Karyn

#5 Guest_Finrussak_*

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Posted 20 November 2005 - 09:03 PM

Karyn
I agree!!! But another problem is that theres no discrete illness(es) like say "Strep throat". Its a group of syndromes; a collection of very overlapping sx; all with varying causes and treatments. It IS maddening but even when Ive tried to classify the dysautonomias thinking I could use the same heirarchy system Ive used for years in teaching scientific classification, I got one massive headache and a sheet of paper with so many arrows and tree connections it looked like a mess!!! Look at EDS. they recently redid their descriptions and there's still ambiguity...better but not perfect. Silly me thought " hey Ill reclassify like they did, present it to the field's leaders ( i.e. Grubb, Low, Robertson, Biaggioni etc) and maybe gain a consensus"...right!! Nice idea but in practice, a nightmare. A similar problem exists when they try to stage Lyme as early, late and disseminated. Some people had sx of "late" Lyme almost immediately!!! Plus so many body systems are affected that to dx by the main problem ( as in "neurolyme = neuroborreliosis" )is almost a joke because I defy anyone to find someone with CNS Lyme and no other sx!!!
Melissa
I too am getting less stares in ED's and elsewhere when I mention dysautonomia or ANS dysfunction...perhaps we are finally making headway!!! First awareness, then knowledge, then understanding!!!

#6 DancingLight

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Posted 20 November 2005 - 11:02 PM

I agree that the information is getting out there...it takes a LONG time to do it and this is a relatively 'new' illness...

I was excited when I went to see my PCP this summer and he had a student with him (who turned out to KNOW me and had played saxophone in band with me!) It was more than weird b/c he was two years younger than me!

Okay, my point:

He came in the room first and wanted to know what was going on. I'm like, how do I sum up seven years to this guy?

Well, I told him my story, he asked a TON of questions. He knew ALL of the terms I used: Chronic Fatigue Syndrome, Neurally Mediated Hypotension, Postural Tachycardia Syndrome, Autonomic Nervous System Dysfunction..

I was IMPRESSED. AND...he even knew that early on they should have viewd my ANS issues as PRIMARY, not SECONDARY to CFS.

He was empathetic and compassionate. And ready to learn more. He was on the internet while I was there researching Dr. Heffez and the link b/w ANS stuff and cervical stenosis and on and on...

I teased him and told him....NEVER TREAT A YOUNG WOMAN like I was treated...don't dismiss her as just 'anxious and depressed'! I said it with a sense of humor (we worked on yearbook together and played in jazz band so I knew him well-enough to tease him and joke and also feel like I could 'educate' him).

This is how I feel we each make a difference and how I feel the word is spreading...a little bit every day.

Okay, going to bed now!

Emily


P.S. His eyes really popped out of his head when he heard all of the treatments I had tried and how disabled I have been by this. He knew of things like florinef and midodrine and the basic treatments. I felt like he really 'saw' what this illness can do...and he commented on how COMPLICATED it is and how I showed him there were no EASY ANSWERS to it. Yeah!