A project for all of us to work on!

[briarrose]

Sorry still half asleep so forgive me please. But I got to thinking and I wanted to put it down before it slipped away.

A few months ago most people posted their POTS stories. I can't remember who took them all down but is that person or someone else willing to take on a huge project? I will definitely help, but not well enough to take it all on.

After my post yesterday I got to thinking that WE POTS patients should help the doctors and researchers out. WE should compile our own lists of symptoms that WE suffer from. And WE can put down the statistical format of how many people replied and how many had what symptoms. A questionnaire that we can test on ourselves. Once we get it compiled then we can pass it out and do a group edit by adding things we remember that we've endured over the course of this horrible illness.

End goal is by making our own survey and giving it back to them! That way they can see that it's a little more common and maybe a little light will click on inside to help them understand us better.

I personally think this is important by helping us communicate to the medical world what's really going on. It's not just blood pressure, heart rate, brain fog, etc.

I have personally told Dr. Grubb, my primary care doc, cardiologist, rheumatologist, endocrinologist, etc that I suffer from multiple symptoms at one time or another. Even Dr. Grubb has said he hasn't heard of a few of those complaints. I think he hasn't heard them because his time is so limited and we only say the immediate worst. But it would be beneficial to enlighten the medical community. Let?s give them the whole puzzle to us rather than a few pieces.

Please help! It's for all of us and the future patients of dysautonomia.

[danelle]

You can count me in! I will be glad to help as much as I can. Right now is a very POTSY time for me and has been for a few months now but I am sure willing to do whatever I can, I think it is a wonderful idea. I am so sick of people and dr's not understanding us. And like you, I think the only way to help educate them is through those of us who know it best!! We POTS folks!!

Let me know what I can do, and in the meantime I will be thinking of ideas!

Danelle

[briarrose]

I'm going to try to formulate something. I need a few days to get it together and go from there. I think if you guys could all think of symptoms you've had since this illness began, that would be great.

I know that each time I got really sick. I would keep a journal on my computer. I just need to get all of the pages together.

I'll keep you guys posted, just be patient and I'm open to any ideas.

steph

[ethansmom]

I will be happy to help too! Just let me know what you need help with and count me in Anything to get the word out to our medical community...

Hope you both feel better soon!!

[briarrose]

I know I was a little bit hot (angry) when I started this but I really do think that it would be a good idea for us to let our docs know what overall symptoms we experience. And I think it adds validity when we stand in numbers. I know this isn't scientific but maybe it will give them more ideas when they do future studies.

Just a quick update. One of the nurses from work is going to help me get this going. Please give me at least a week. I'm in my 4 day-12 hour stretch at work and this is the last week at school for the kids, so it's a little exhausting and hectic.

thx

steph

[pamyla]

Hi Steph, Have you considered using an online survey tool to collect the data? I do this at work and poll large groups of people. It's really quite simple. There are lots of free programs out there and once you set up your questionnaire it collects the data for you. And it usually gives you lots of good statistics I've heard survey monkey is a good tool.

http://www.surveymonkey.com

If you click on pricing you'll see a basic subscription is free. They also give a large list of other survey sites.

If you want my help, let me know. This is right up my alley, especially as I'm about to begin grad school where I'll learn lots about testing and statistical analysis.

Pam

[briarrose]

Pam

Great! Would love your help. I will contact you at the end of this week or middle of next week when I'm set to go.

Thank you

steph

[MomtoGiuliana]

Steph

I just wanted to add that Vanderbilt University is working on this project too. I saw my POTS specialist today and he told me about it. I was describing some of my remaining symptoms and he said how so much is still not understood about autonomic dysfunction and that there isn't even an agreed-upon, exhaustive list of symptoms really available. Anyway, he told me that the Autonomic Dysfunction clinic at Vanderbilt has developed a symptom list that includes many symptoms that are only recently being "accepted" by the medical community. He said he is going to start using it to help evaluate new patients.

Unfortunately he didn't have a copy of the list handy to give me. However, this is what I found on-line.

http://www.mc.vanderbilt.edu/gcrc/adc/adsq...estionnaire.PDF

Honestly, this doesn't look exhaustive to me, based on the symptoms I've had and also seen described on this forum. But, maybe there is some way we can work with Vanderbilt on this list and then work with them to distribute it to doctors.

Katherine

[briarrose]

Katherine

Thank you for your email. That is great news about Vanderbilt. I'm glad they realize how problematic this is for us. Who is your doc at Vanderbilt? Maybe I'll call Bonnie and see if she will accept our data.

Thank you for the questionnaire form too. I actually had that one from last year when I applied for one of their studies and I also have one from the NIH. I will be compiling those two, plus coming back to DINET and NDRF to pull peoples past symptom complaint lists. I will at some point ask people to either email me a symptom list or post it here, which ever they're more comfortable with doing. I will need everyone?s help to make this a successful and complete list.

I will remain diligent about this project until I get it done, no matter how I feel. Maybe it will be therapeutic to help curb my anger at the medical community for they're lack of being able to help us, it beats counseling

Steph

[MomtoGiuliana]

Steph

My doctor is here on the eastern shore of MD, but he communicates with Vanderbilt in some fashion, since he is an AD specialist.

If you know someone there, I think it makes a lot of sense to talk to them about what we want to do and see if we can work through them.

I think you have a great idea. Developing this list AND getting it to doctors, especially non-specialists, has to help! Doing this thru an existing avenue (e.g., Vanderbilt) will augment whatever effort and product you/we (collectively) develop.

Katherine

[Merrill]

Between the Vanderbilt questionnaire and the symptom list you can launch to from the potsplace home page (which includes a section for patient-reported symptoms along with research-proven symptoms), we'll have a REALLY good start. Doncha think?

Things get a little complicated, I suppose, because it seems like some people suffer only from POTS, while others suffer from POTS and other diseases and/or syndromes not related to dysautonomia. I would imagine that sorting out which symptoms come from what condition would be difficult!

Still and all, I plan to bring the symptoms list to my follow-up appt w/cardiologist in a couple weeks. I highlighted the document earlier today, marking the symptoms I experience, and I was shocked to see that I marked 30 out of the 59 listed. (I wouldn't have guessed it was that many!) Plus I added one more: dry mouth and dry eye, which, given other posts here and on ndrf, should be added to the second list of non-proven patient-reported symptoms.

funny note: I saw my dentist today for a checkup (I also consider him a friend), and he commented on the whites of my eyes and said I looked really healthy. (It's true that the whites of my eyes are very white and clear, but...) I had to laugh--and I pulled out a copy of my marked-up symptom list and gave it to him. I thought of this post when I did so--if we're going to educate the medical community, dentists count! (Who knows, maybe someday he'll have an undiagnosed patient in his chair who will complain of some of these things...)

Take good care,

merrill

[briarrose]

Thanks Merrill

Yep I'm going to have a long list when I'm done. I will have it out by the end of next week. We have a lot of kids functions still this week, last day of school tomorrow.

Funny, I wouldn't have thought of the dentist But great idea, they count too.

Wonder why he commented about the eyes? What was that suppose to mean? What color would they have been? I'm asking because this last week mine are red. I look like some teenager that has been smoking weed and no I don't

I think my eyes are going to be permanently blood shot. I know that when your eyes are yellow that indicates jaundice. hmmm...

[Ling]

Sounds great, very long lists expected. Will be looking out for this next week.

[briarrose]

Everyone

Thank you for being patient with me

[purplefocus]

I would love to help anyway I can. I am from the south (Alabama). I rarely see anyone post on here that is from this part. We need to educate everyone everywhere.

Paige

[migraine]

Good idea. This forum actually has a symptoms page listed. I suffer (though not severely) from 90% of the symptoms. I usually take that list to the docs with me and highlight the ones I have. Maybe you could list each one of those symptoms and we could all checkmark the ones we have. Then we could get a % for each symptom we have as a group and so on. Just an idea, though I would have no clue how to set this up on this forum

[Deb]

I'd love to help in some way, too. Steph, I think you posted the observation of your Dentist? I found that amusing because even when I am feeling crappy, I have people tell me how good I look. I think that must be why some people don't really believe POTS is a "real" illness.

[briarrose]

Just an update. I'm still working on this, a little slower than I would like. My son graduated from high school and the other kids had last day of school last friday with school functions nearly everyday.

Then this weekend my 3 girls developed vomiting, diarrhea, cramps, fever, headache that when on for over 18 hours straight. Had to take one to the ER for IV fluids and pain meds. I'm praying that my boys and I don't come down with it. Anyway, there is my excuse and I will have this list out to you as soon as possible. Please everyone hang in there with me.

thx

steph