Seeing A New Researcher

[Megan]

I hope your visit went well...

Meg

[Rachel]

When someone doesn't receive replies, it doesn't mean that no one cares. Many of us simply don't have the mental or physical energy to respond to every post we would like to respond to. Other times there is a question asked that other members just don't know the answer to.

I actually read your post, Ernie, because I wanted to know how things went for you. I just was not able to respond.

Rachel

[morgan617]

Sorry ernie, at the time it came up, I was having problems with the site and didn't realize it was a new post. hard to explain. I never look at the number of posts, just the title and sometimes flip through to see if anything new has happened, but my life has caused me no end of grief lately and I've been sucking my thumb, sulking in the corner, so sorry I missed it! Hugs and sorries....morgan

[Maxine]

Sorry Ernie,

I was traveling for my study about the same time you gone done with yours---

Then I posted about mine about three days after I got back--- I haven't started catching up on others posts until recently. In fact, I didn't know when you were going until today when I read your post again. You went just as we were getting ready for mine----we left on the 31st, and came home on the 3rd, and got home about midnight. It was a 10 hour drive, not 10 minutes----like I said I my other post on here----------(10 minutes?---LOL)----I wish.

I really hope you got more answers, and they were able to help you. If you want to PM me with your visit to the researcher that would be great.

I got about 4 responses to mine------------ )

I'm sorry you didn't get more responses to such an important post---------considering your contributing to the answers that some of us get through this research. I commend you for your help in this research, and I hope more and more people step forward and help contribute just as you have.

BIG HUG,

Maxine :0)

[dizzygirl]

ernie~ im sorry for your lack of responses to your visit with the new researcher... I know that i do not get on here as often as i use.. simple b/c i dont feel well...

i would love to know if you made any progress and are any closer to getting proper treatment..

love and hugs ernie!

dizz

[MightyMouse]

Please never assume that because no one has responded that no one cares about your issue. You can tell how many people are thinking about you by looking at how many views have occurred (currently 500+ for your thread). Please take that into account.

It can take days, even weeks sometimes for me to get through all threads where active discussions are happening--even for me as the administrator. That is why we have multiple volunteers helping -- all of us are sick too. Rachel is correct, sometimes members, myself included, don't have something helpful to add and/or are just too exhausted ourselves to reply.

[Sophia3]

I am sorry you got no response.

I second what the mods have said here.

I have not been around much dealing with my own stuff, new mysteries and lack of energy to support others due to dealing with self.

I tend to like to discuss off topic stuff and avoid my issues at painful times, but I understand wanting support after your research results.

Sometimes I just can't deal with illness even after 18 years though I don't leave the house for a few days...other times can get out for few hours.

I go to some sites where I talk about anything but myself and my illness. Current events, motorspors, etc

.

[BEE]

ERNIE...have thought about you time to time and wondered how things were going...

Hope they are doing ok

[juliegee]

((((((Ernie))))))

JUlie

[ajw4790]

Hi!

I am sorry that you did not have many responses to your post. I don't remember myself ever even seeing it, probably due to not being on here very often recently. I know that people care about how it went for you, and that the lack of responses didn't have to do with a lack of interest. I too think it is great when people go out of their way and use their time and energy to participate in research that may not only help themselves, but many others as well. So, I think that it was wonderful that you participated in this, and I hope you found it beneficial, and hopefully some kind of help from it. I do not think that anyone meant anything negative by not replying to your post.

You will have to let us know if they inform you that their research yielded any useful results overall for the population tested.

Hope things are well!

[Ernie]

Hi,

The trip was 9 hours one way. When I arrived home after the 2 days of testings I was so excited that I posted first thing getting in the house, even before calling my friends. I felt that it was important to share the news with you first because we have the same disorder.

I felt hurt when after a few days I only had one answer because I invest myself a lot in being a research patient to help myself and my peers. It takes a lot of physical, emotional, and financial resources as well as a good support system to accept that role. Clinical doctors are afraid of me because I am so off the book but researchers enjoy studying me. So for the time being I have accepted to help by lending my body.

I am not upset at any one specifically. I believe in team spirit and common goals. We have a disorder where there is only a few doctors able to help us and we have to stick together and help each other out.

I spent 3 hours with this researcher on Tuesday and she explained her theory. She thinks the origin of my disorder is in my brain. Since she has never seen a case like mine she wants to find a team of researcher who will be able to do further testing.

She has an international reputation and people come from all around the world to see her. She really knows her stuff.

When she told me that she wants to help me get better, I felt that she was sincere and that she was really going to do something about it. I was on cloud nine. She will keep me informed when she finds another researcher.

So I hope she will find this fantastic researcher pretty soon!

[runningshoe]

When I post I am always anxious to see the respones. Sometimes I feel dissapointed and sometimes I am pleasantly surprised. Part of my learning to live with chronic illness is getting away from the computer and taking a mental break from pots (as much as is possible). I am trying to only check in once or twice a week so if a post was only left on for a day or two I would miss it. I hope that you find answers and share them with us. I will be very intersted in what you and the doctors learn. Thanks for being willing to keep us up to date!

Lina

[pat57]

Hi Ernie,

I was having the same problem morgan had- with the site. As I recall the top 10 posts were 2 years old. I don't have the patience (or the time) to

try to figure out what was going on- no doubt I missed your news.

Please do keep us updated.

And good luck!

[Guest tearose]

Hi Ernie,

I am so sorry that I missed your post too. Sometimes I get busy with my 3D life and loose many days here. Sometime when I am here I may only have time or energy to read only the last several threads and it is just what ever is on the list I get to read.

Thank you for sharing and thank you for letting us know you felt neglected. Please don't ever feel this way. So many of us do care and feel badly that you felt we were not interested!

This researcher sounds very interested and sincere about helping to understand what is happening to you. I am so glad for you and for all those who will benefit from your participating in this research. And that was a long trip!! Please keep us posted and if by some odd chance I miss it send me a message!!!

best regards,

tearose

[lalalisa]

Ernie,

Hello! I'm sorry I missed your post as well. My husband has been sick and in the hospital for 2 weeks now and I just haven't been around.

I'm SO glad to hear that this researcher is working so hard to help you! I'm looking forward to hearing more about what you learn from this research!

Take care,

Lisa

[SunflowerPower]

Ernie,

I have been following all of your posts with great interest. I have been looking forwarded to contacting you.

I also experience episodic paralysis and POTS. Like you, I have been working very hard to uncover the origins of these symptoms and I have experienced many of the same frustrations that you have. Sharing your experience is very important to everyone, especially to me.

Ignorance has by far been the most frustrating barrier to a diagnosis.

[Maxine]

I can assure you Ernie has helped many, many people just by going through the research studies.

Maxine :0)

[yogini]

Sorry I didn't respond. I think I missed your update b/c you added it to an old thread, which I tend to skip over. You'll probably get more replies next time if you start a new thread.

I know I don't always get responses to my posts. Sometimes it's disappointing, especially when you're in a place where you need support. But as others have said, it's not personal. Ernie, you are probably one of the people on the forum that is most cared for! Glad you found a good researcher.

[Ernie]

Hi SunflowerPower,

My post at 9:26 pm yesterday was the update of my trip. The neurologist has never seen a case like mine and could not give me a diagnosis. The most important plot in my post for the medical information is as follows and was posted on that day:

I spent 3 hours with this researcher on Tuesday and she explained her theory. She thinks the origin of my disorder is in my brain. Since she has never seen a case like mine she wants to find a team of researcher who will be able to do further testing.

I was a therapist before I became disabled and I have been helping people all my life and I will continue to do so until the day I die. I will probably give my body to science to help scientists cross new scientific barriers. We also gave my brother's body to NIH for the study of POTS and NCS.

I have been a research patient since 2003 and part of the reason is because I want to help other. Of course it is also to help myself. Helping others is very important in my life.

[morgan617]

Ernie, since you and I have had many of the same symptoms, that most of the others don't share (periodic paralysis for one) and require massive doses of potassium, I am always interested in the testing and research stuff you do. If they can unlock the mysteries in you, maybe there will be some light for me.

You know the struggle I have to get any help what so ever, so I live vicariously through what you learn. I would be a guinea pig, it's just that no one wants me . So I have to depend on you.

I have a question. Since you have been on really high doses of K+, like me, has your BP dropped at all? Mine was 80/44 yesterday. ugho, that's lower than my diastloic usually ever is, but I have noticed the higher the dose of K+, the lower my bp goes.

You are special to everyone here, I guess we are all just having some really off days.

Pat, I'm glad it wasn't just me, I thought I was hallucinating or something!!! morgan

[Ernie]

Hi Morgan,

K+ does not affect my BP but it affect the time I can stay upright. So the more I take the longer I can stay upright.

If I don't take any K+ my HR goes in the 30s when I am supine and when I stand it goes up to 180 to 250.

Thanks for the sweet comment.

[Megan]

Ernie, just want you to know that I think you're awesome, and that I'm praying you get some answers!

Meg

[Ernie]

My dear friends,

Thank you all for your support and kind words when I was in a dark moment. I feel much better now and I appreciate all what you did for me.

Love

[Sophia3]

Thinking the illness originates in your brain sounds very interesting. Look forward to updates from you, Ernie.

[ajw4790]

Ernie,

Sorry it took me a while to get back to respond to your post, but I am glad that the researcher took the time to sit down reason through the findings and share them with you. I hope you continue to find some answers and assistance to deal with your symptoms. I hope things are doing better and keep us updated!