Interested in find correlations between us by filling out a survey?

    • Anonymous
      March 9, 2010 at 11:44 am

      I am new to this as most of you know and am fumbling through and not doing a very good job but have notice some similarities such as someone mention spina bifida. I have spina bifida occulta. Someone else mentioned not seeing in 3-D. So I became excited and wanted to know if anyone is interested in filling out a survey with statistics to see if there are any correlations.

    • Anonymous
      March 9, 2010 at 2:45 pm

      [FONT=”Microsoft Sans Serif”]i’m game ๐Ÿ™‚ [/FONT]

    • Anonymous
      March 9, 2010 at 5:26 pm

      [I]sorry, Shelley … you will find that any one of us, or any one of the general population, will have this-this-that problems going on with their health. Find a dozen folks with sinus trouble and it’s going to correlate? Nope.

      Clutching at straws.[/I]

    • Anonymous
      March 9, 2010 at 6:38 pm

      [FONT=”Microsoft Sans Serif”]…i think your idea is great. although the information is theoretical, rather than empirical, the dialog could be helpful and empowering for those who choose to participate and who want to explore this. certainly there is an adequate range of frivolity in the spectrum of posts here– i see no reason why this is anymore “clutching at straws” than …
      well, i think it’s worthwhile and i hope many on the forum choose to participate; who knows what we may learn in terms of correlative data–[/FONT]

    • March 9, 2010 at 6:42 pm

      Count me in. Could be very interesting.

    • March 9, 2010 at 6:51 pm

      I would participate, as I just posted on a new thread I started, I think that many of us share brain fog, sleep, fatigue, gastro issues (not related to gastro paresis) allergies, sinus issues. I think these issues all relate to candida.

      Incidentally Alice, you mentioned in your protocol that you were given fungals, how long did they do it for as well, being that you were previously on prednisone, did they ever test for candida before? A while ago befroe or during the treatment you used to mention canker sores and a rash in the corner of your mouth, do you think it was candida and maybe you had it for a while? If you remember on one of our phone calls I mentioned we too had a fungus on the face and frequently had canker sores. Apparently these are indicative of a systemic fungal infection. Our stool sample confirms. Have you gotten those symptoms since they gave you the fungals right before harvest? I was wondering if your other issues, not related to cidp or the stem cells were better and if you think the fungals could have helped. I guess since we are going to start tomorrow, I will find out eventually, I am just anxiously wondering. Also, did they recommend you stay away from soy, sugar, cheeses or any other yeast contributors permanently or for a while?

    • Anonymous
      March 9, 2010 at 6:54 pm

      While I realize the complexity of each and every one of us, I hope that I will always be clutching for straws because it means I’m still curious and hopeful that one day there will be a correlation what if just 2 people here had so many similarities and there meds were completely different one was in a wheel chair and the other out and about wouldn’t that be worth it… isn’t that what research is all about and aren’t we the ones under the microscope? I do however; understand your feelings and appreciate everyone’s privacy, my mother-in-law who has 4 autoimmune diseases feels the same way. Yet for me, I have 2 weeks out of every month where I can be a mother and wife and actual sit here and spend this much time sitting and typing because I begin to feel sick from sitting. I have to get stronger, figure out why I end up in the hospital every month, for my children. So for them I will remain filled with questions and hope. That I will find someone out there who’s stomach was dx as working only 20 percent in Dec of 08, whose cycle could be causing them problems or colon issues and say what has worked for you at this point I am trial and error yet the only thing that they have tried up until this point are large amounts of iv pred every month and then begin again tapering down. Sorry for the length I am having a sad day.

    • Anonymous
      March 9, 2010 at 7:00 pm

      [FONT=”Microsoft Sans Serif”]dawn, i think we wrote each other at the same time;) i responded to your other post… let me go back there to answer your questions better–

      shelley, keep up the hope and curiosity– stay strong and always fight–
      and… i hope you feel better dear.[/FONT]

    • Anonymous
      March 9, 2010 at 9:14 pm

      I am willing. From what I’ve read, many of us have been afflicted with spinal problems — stenosis, disc problems etc. I myself have had herniations at c3-c4 and c4c5 . I know that this isn’t a cause of CIDP, though I do wonder whether on-going inflammation of nerve roots in the spine can help send the immune system into overdrive.

    • March 9, 2010 at 11:35 pm

      hi shelly, as alice eluded to, everything will not be scientific, but it will have benefit if not to you, maybe me, or someone else and that is what is important. I have been searching for some time now as I am not able to get answers from some of our docs. I feel our destiny is in our own hands and through research and investigation we might find a piece to the puzzle. For instance, I keep referencing to Alice’s protocol w/the fungals, it has stuck with me for a while, that these docs gave her fungals because they do recognize the dangers of yeast caused by the cytoxan. So although there was only an indirect connection as we do not get cytoxan, it was a very important thread to me because it related to my obsession of this candida quest I am on.

      So, not everyone will participate or even see the relevance, but hopefully maybe one person can make a connection. I am trying to not over do my investigating or searching or comparing of notes, but sometimes I feel it is the only way to hold onto some control that this disease takes away. So how do you propose we do this because I am very delayed in computer development!! There is a nice man named Norb, he rocks w/charts and graphs, maybe he could help?? Maybe we could start a thread with names of people who would want to participate and make a chart and plot it with specific issues, maybe 5 a week, say sinus issues, low grade fevers, constip., cold feet/ hands, what ever and then give the people a week to respond, maybe mon to mon? and then when we are done, graph the chart. I think if anything it would just be cool to see how similar we really are!! So try not to be sad and remember, things do get better.:)

    • March 10, 2010 at 12:57 am

      I’ll participate.

    • Anonymous
      March 10, 2010 at 3:03 am

      I’ll participate and I’m also a whiz with charts and graphs so you can dump the data on me if you want and I’ll do my best to make some sense of it. As I said in my PM, there are differing and strong opinions on here as to whether or not things correlate. I think it’s not so important to find connections as it is to feel that you are doing something to help yourself, and possibly others. To that end, the exercise will probably have a positive result regardless of whether any useful data comes of it.

      Most important, in my opinion, is to not squash the enthusiasm of people who are struggling to make sense of the chaos life has dumped on them by denigrating their efforts and stating them worthless.

      But none of us would do that to each other, right? ๐Ÿ˜‰

      Julie

    • Anonymous
      March 10, 2010 at 8:31 am

      Thanks guys for your support!! I am talking with a computer friend of mine to see what he has in mind. He was excited from the moment I mentioned it. I want the men to know out there not to worry about “female” talk. I am sure we can set up another thread when that becomes necessary, just emotionally yesterday ๐Ÿ™‚ Why don’t my smilies work?

      What I was thinking for this survey involves all of us I want to know what questions you want to have answered and incorporate it all. One thing I have been thinking about is our privacy. We all know that anyone out there can read our threads which is wonderful but… not for this….any ideas?

      I have to go to the doc this morning but look forward to coming home and speaking with my friend and hearing from you guys!!!

      Dawn, I love your idea. Do you think we should set up another thread or just keep everything here?

    • March 10, 2010 at 8:45 am

      Like I said Shelly,
      I am missing brain matter re computers. So I don’t know if there is a certain amount of space per thread or not. Maybe one page could be the actual data result page so it would be clear and consice with nothing else confusing. Maybe another page could be the reporting page. Who knows? I can’t wait to see how many people do or don’t have these leaky gut symptoms of sinus,stomach, constip,diahrea, cramping, low grade canker sores, skin issues, fungal infect. I want to see if there is a higher incidence of these symptoms and the additional accumulation of other autoimmunes with cidp people compared to gbs people. Actually, do you think it would be possible to have a side by side chart so we can easily compare cidp issues and gbs? Hey, maybe we could sell the findings to the docs!! ๐Ÿ˜€

    • Anonymous
      March 10, 2010 at 9:11 am

      Dawn, Now your thinking!!!!!! Ready for the big bucks haha

    • Anonymous
      March 10, 2010 at 2:11 pm

      Count me in, too.. ( pending I really have CIDP and not CMT )

      Stacey

    • Anonymous
      March 10, 2010 at 11:29 pm

      My school uses the web site Survey Monkey for all sorts of surveys. It is a free web site that helps you build the survey, and then assigns the id to access the specific survey. We use it for very brief surveys and more complex ones – and then it compiles the data so we can all read the results. It is [url]www.SurveyMonkey.com[/url] – or you can just Google Survey Monkey and it will take you right there.

      I’d love to see a survey – until reading this post I did not realize a lot of GBS folks had back problems. I have scoliosis and prior to coming down with GBS this winter I had 2 8 hour surgeries – one in May, one in Aug. Wonder it there is a connection?

      Good luck with the survey – I’d be glad to participate.

      Cathie

    • Anonymous
      March 11, 2010 at 12:00 am

      I’m in! Keep me posted.

    • Anonymous
      March 11, 2010 at 4:06 am

      Put me down 2,Jet

    • Anonymous
      March 11, 2010 at 5:44 am

      Sorry for the delay! You guys wouldn’t believe our day. I think we spent maybe two hours at home until 8:00pm. I had my dc appt had a minor procedure came home something went wrong had to go back in the meantime, husband has to get kids out early to get me back to doc. However when he gets them our daughter is pale in tears and complaining that her left side hurts. My hubby calls his dad but somehow they work it out that we are going to DROP off our children at their house. Mayhem… Anyway she is fine and I won’t bore you to death about our 3 our emergency stay. I am fine too. The exciting part was how much I walked yesterday. The bad news is I haven’t been able to do my part on the survey yet L:(

    • Anonymous
      March 11, 2010 at 9:24 am

      I’d participate, even though I’ve not been diagnosed yet; it’s interesting because I was thinking of doing the same thing. Boards offer a great way to do it, too, using the “polling” applications on the site.

      I think it would be something of benefit, especially to newbies like me who are constantly asking…”Anyone had this/that”…

      I’d be willing to help with it, too, if you needed.

      Elmo

    • Anonymous
      March 11, 2010 at 9:50 am

      Count me in too.

      Kelly

    • Anonymous
      March 11, 2010 at 1:02 pm

      Me too! Let me know if you need any help!!! Cathie – thanks for the info on the survey website – that comes in handy!

    • Anonymous
      March 11, 2010 at 3:56 pm

      [FONT=”Microsoft Sans Serif”]sounds like you’re getting some good support and participation shelley! great![/FONT]

    • Anonymous
      March 11, 2010 at 4:06 pm

      Thanks Alice! I can’t believe it. Hope all is well on your side.

      Elmo, I have been meaning to ask you….can you tell between sharp and soft objects when your eyes are closed?

      Guys, I have sent about 20 questions over for my friend to create just as a starting point for us because we can have this as detailed as we want. It just depends on how many questions we are will to answer. Everyone has told me to keep it simple but….not my nature ๐Ÿ™‚

      Anyway thank you all so much for this. I hope to have a “protocol” by tom.

      After seeing it, would you guys be willing to add some of your own questions that you have? I have included questions about chronic headaches, fungal infection, and of course others but these were some I saw members mention.

      Kids are home and it is homework time. Take care all!!

    • Anonymous
      March 14, 2010 at 4:13 am

      Shelly

      I’ll be happy to participate. And to answer Elmo’s question. I can feel the difference between sharp and dull when I squeeze harder and longer.

      The problem with that is froquently the sharper objects puncture the skin by the time I figure out they are sharp (if I have my eyes closed !!)

    • Anonymous
      March 14, 2010 at 5:12 pm

      Count me in. There used to be a PC program call SPSS [Statistical Package for Social Sciences – I think that’s the name] that would compute the interdependence between inputs. It been many years since I played with it and I don’t know if it is still around or it it will run on today’s PCs. If it isn’t than perhaps there is something like it that would show the relationships between the inputs without having to wear out a whole lot of stubby pencils. ๐Ÿ˜‰

    • Anonymous
      March 15, 2010 at 7:57 am

      Thanks Jim, I spoke with my friend this morning and…[Hi Jim, but the software we need, needs to run server side (on Linux). We are testing several packages now, but whatever we use will be quite simple.] So any ideas…..

      For the exciting part……. [url]http://cidpresearch.com/index.html[/url]

      My friend has gone above and beyond for us and I want you guys to look it over and give any ideas, feed back, change wording, we need an our goal statement. Please know that anything can change and I have made sure that our forum is on the left hand side.

      For me this is for research and education for all!

      Today I have 2 out of 3 children sick, ultrasound at 9 ivig at 10:30 which lasts until 3. Hope to here from you soon

    • Anonymous
      March 15, 2010 at 9:27 am

      Shelley,

      I love the site! I am so, so impressed!!!! I will be thinking about the goal and the survey today and get back tomorrow with some suggestions! But I have to say the artwork is perfect (LoL)!!!

      Well done!!!!:D

    • Anonymous
      March 15, 2010 at 10:07 am

      [FONT=”Microsoft Sans Serif”]agree with linda!

      my vote is to put lots of “stress” inquiries there…

      best–
      alice[/FONT]

    • Anonymous
      March 15, 2010 at 12:40 pm

      [I]Web site is very good … congrats!

      Having said that, however, why is this any different than what we have here … or on Facebook for that matter? Why another site?

      There is by no means a large enough sampling here or anywhere else to do the sort of survey researchers would be interested in.

      Hate to rain on the parade, but gotta’ be realistic.[/I]

    • Anonymous
      March 15, 2010 at 12:44 pm

      [FONT=Microsoft Sans Serif]i hear its sunny both in chicago and in florida–
      — it’s a worthwhile pursuit and as you can see– many here agree, most actually ๐Ÿ™‚

      what you are doing is of a unique nature, don’t allow anyone to cover with clouds.

      alice[/FONT]

    • Anonymous
      March 15, 2010 at 2:01 pm

      Shelley,

      that is awesome…thank you !

      Stacey

    • March 15, 2010 at 5:47 pm

      [SIZE=”2″][/SIZE][FONT=”Arial Black”][SIZE=”5″]
      Please, can we be careful not to cause ill feelings. Rocky, If you don’t like the survey or the info it may or may not provide then it is probably best that you don’t upset yourself looking at it. Some things might be silly or irrelevant but some things might have merit. I am once again coming to the site comfortably and happily and I am sure others feel the same. I don’t want to see any of us get hurt or upset again. Let’s just take each other for what we are, people trying to over come illness in what ever capacity we can. Be it emotional support or comparison of symptoms. Different things help different people. Please do not take offense or think I am being hurtful, I just want everyone to be able to join, contribute what they think might be a good idea without fear of being rejected.

      About the validity of the sampling, There were some studies handed out at the symposium in Chicago, one in particular had so many variables as to the amount of people in the sampling and other crucial info that might not give accurate info, but I looked at it and tried to take what I could from it, as it would be nearly impossible to create a trial, survey with a large grouping of people due to the nature of this disease and how many people are actually dx, how many were dx quickly etc. There just are no constants in the disease or the collection of data to support an accurate study.

      Please lets take everyone into consideration and just try to relax and help each other however we can.

      Thanks for listening I hope I have not offended anyone this time. [/SIZE][/FONT]

      Sorry about the font, did not realize it would be that big, I only went up two numbers, I can’t figure out how to change the font without erasing everything on my e-mail, 5 is barely readable, it is huge on here. So I was not attending to make this so overly noticeable. In my defense, I don’t even know how to copy or paste to check out the survey, so sorry about the font!

    • March 15, 2010 at 6:08 pm

      Hi guys,
      Please lets not get angry at each other again. I am finally feeling comfortable about posting freely again and trying to help others again. I am sure others feel the same. Rocky, I don’t want to go against what you feel and to some degree you are right, there is no scientific data to support our findings, but so many surveys, abstracts regarding cidp by scientists also are speculative at best. The nature of the illness is what hampers results scientific or patient made. I don’t want you to be upset and feel we are not listening to your point of view but at the same time, I don’t want other newer people getting up their courage and excitement to understand their disease to be hurt or upset either. Some how we have to figure out how to respect each others ideas without offending. I was part of that mistake recently and am trying to work at being more understanding to others feelings and thoughts.

      I am hoping to learn lots of things from this survey that may help me down the road and I would hate to loose that opportunity if people feel uncomfortable participating.

      Lets just do what we do best, support each other be it emotionally or with experience or readings regarding new info. it is too hard to deal with cidp/gbs and outside turmoil.

      Please lets just try to support each other if we can and if we don’t agree with a particular idea or stance, lets just take a back seat and let it go.

      Thanks for listening.

    • March 15, 2010 at 6:23 pm

      OK, because I am mentally impaired regarding computers, could someone send me in that blue link form that I can just click on the web site for the survey? I tried to type in cidpresearch.com and I got some wacky stuff. It is a wonder how I function on the computer, I need to get over this problem I have!!! I am vowing to learn to copy and paste before the months end. You guys better be prepared, I might get carried away with articles I find ๐Ÿ˜€

    • Anonymous
      March 15, 2010 at 6:28 pm

      Dawn,

      I see you point. However one thing to remember in any survey is the sample size. Since we are blessed with such a “rare” disease. Any survey, whether this pending one or one done by a doctor or research specialist, has a problem acquiring a significantly large sample size. Since this survey is being done via the web there is a chance that it could have large sample size. Will the results be significant? As you pointed out, who knows. I think is was wise of you to point this out to the newer member less they expect too much. At the same time there is no reason not to try. Who knows what will come out of it. After all according to aerodynamic engineers the bumble bee can not fly. They just haven’t figured out how to tell the bumble bee. ๐Ÿ˜‰

    • Anonymous
      March 15, 2010 at 6:43 pm

      Dawn –

      Left clicking is like your finger. You say I want THAT. That’s what the left clicker is for – you pick out what you want.

      The right clicking is for your options.

      Steps to copy & paste:
      1) LEFT click on the link & slide the mouse over it (it should light up in blue)
      2) RIGHT click over the link (a little box should pop up)
      3) LEFT click COPY (the box will disappear)
      4) Move your cursor to the area where you want your text to be moved to
      5) LEFT click (the cursor will move to that area)
      6) RIGHT click (the box will pop back up but with less option)
      7) LEFT click PASTE

      There ya go.

      Kelly

    • Anonymous
      March 15, 2010 at 6:46 pm

      It’s important for me that everyone understand that this is not ** MY ** web site, other than the fact that I engaged the assistance of my friend.
      This is for all of those out there that are interested in taking the time to see where this leads if nowhere what have we lost but time. But again if I can reach one person that felt as alone as I did b4 this forum then I will be happy. Before I even began my thread, I contacted the forum and spoke with their data person. She informed me that they didn’t have anything like that and that this was just a place to come and chat. That is why I started the thread. We want and need suggestions and will try to implement whatever EVERYONE here wants.

      You guys this is very raw and for me this is about the way I am treated by those that have never heard of this before. I don’t know if anyone else has experienced any negativity when dealing with ER and Ambulances and just everyone out there that doesn’t understand but I have too many times now.

      We have a direct link to this forum, as well as to the GBS/CIDP. I am NOT trying to take away from them but am actually being a non-paid sales rep ๐Ÿ™‚

      Thanks you guys for still supporting me!!

    • Anonymous
      March 15, 2010 at 6:51 pm

      Shelley – I SO know what you are saying. When I first came here in 2005/2006 I think I was the only mom with a young child with CIDP here. I felt SO alone. I learned so much from the adults & when other mom’s started showing up I was so freakin’ happy. Not happy that their kids were sick but happy that I would finally find people who really understood what I was going through as a mother. Since then, whenever a mom (or dad) comes on about her young child, I always try to reach out to them. I’ve made some great friends & I know I’ve helped some people too (and that’s a good feeling).

      I also understand how frustrating it is dealing with people who don’t understand CIDP. I’ve been dealing with Emily’s gym teacher for the last 2 years. I guess he thinks it’s not as bad as I’m saying because Emily looks normal. People forget there is a war going on inside of her body every second of every day & has been for at least the last 4 years.

      I think what you’ve attempted to do with the survey is a good thing & I’d like to say I’m proud of you for taking initiative.

      HUGS,
      Kelly

    • Anonymous
      March 15, 2010 at 6:51 pm

      shelley,

      The site looks great!! ๐Ÿ™‚

    • Anonymous
      March 15, 2010 at 7:02 pm

      [QUOTE=Emily’s_mom]Dawn –

      Left clicking is like your finger. You say I want THAT. That’s what the left clicker is for – you pick out what you want.

      The right clicking is for your options.

      Steps to copy & paste:
      1) LEFT click on the link & slide the mouse over it (it should light up in blue)
      2) RIGHT click over the link (a little box should pop up)
      3) LEFT click COPY (the box will disappear)
      4) Move your cursor to the area where you want your text to be moved to
      5) LEFT click (the cursor will move to that area)
      6) RIGHT click (the box will pop back up but with less option)
      7) LEFT click PASTE

      There ya go.

      Kelly[/QUOTE]

      Does this mean I have found the one that will help with the instructions for the site ๐Ÿ™‚ just put in your current user name no password needed for the Live Chat tab.

    • Anonymous
      March 15, 2010 at 7:04 pm

      Oh no, no, no. You do NOT want to rely on me for ANY technical stuff. I’m only a step above Dawn in that department.

      I’m still trying to figure out how to get my face machine to work. It jammed a few weeks ago & still says “Set original”. I have NO idea how to fix it – so I unplugged it. I’m hoping it will reset itself?

      Kelly

    • Anonymous
      March 15, 2010 at 7:18 pm

      I understand completely!!! Other than listening to my husband complain about the amount of time I have spent on the computer lately…. I love the computer but can’t sit or stand for too long and it upsets me to no end! I truly appreciate your support and kind words. Will cut and paste your instructions though for the live chat.

    • March 15, 2010 at 7:26 pm

      Kelly,
      What planet are you on woman????? You can’t even walk me through it over the phone, now you want me to figure it out when its not even on the same page. Well, I suppose I could print it and have it in front of me. It all boils down to my fear of wrecking the computer and then my husband gives me that husband like lecture. I don’t know what my major malfunction is, you should see me do electrical work, I can put in a ceiling fan do drywall, change oil, I vow to get over this, I’m serious it is a real problem. How weird?

      Shelley, I am glad you are doing this, I can’t wait to figure out how to get to it so I can participate!

    • Anonymous
      March 15, 2010 at 7:34 pm

      Dawn – I wrote it so you wouldn’t have to call me when you needed to do it. Just print it & keep it with your computer.

      If you want to practice just use one of the kid’s computers. That way if you break it, you can blame it on them, LOL. But don’t use a Dell…you don’t want to have to deal with their customer service.

      Seriously though, you will NOT break the computer with copy & paste. I promise! And if you do, just tell your husband to call me & give me the lecture. ๐Ÿ˜‰

      Kelly

    • Anonymous
      March 16, 2010 at 9:45 am

      [FONT=”Microsoft Sans Serif”]you’re awesome! keep up the good work– it’s much appreciated here– we are a group of people all sharing the same affliction. what better place to compile information for which to learn from– maybe make a connection.

      dawn– you make a good point– wish all would embrace. disagreements are healthy, especially when we learn from and make peace after, as we did. hope to meet you in chicago– i’m returning there today, assuming i get on as i fly stand by…

      is it still sunny? ๐Ÿ˜‰

      hugs,
      alice[/FONT]

    • Anonymous
      March 16, 2010 at 10:14 am

      Really nice start with the site… somethng I could only do with lots, and lots of help and maybe a lot of emotional pampering!

      Thanks so much! ๐Ÿ™‚

    • March 16, 2010 at 10:18 am

      Alice,
      YES!! It is sunny, 70 on Thursday!! Snow on Sunday ๐Ÿ˜ก

      Learning from our disagreement was a great thing! I have used the experience to try to be more aware of people all around. Glad we were able to talk on the phone.

    • Anonymous
      March 16, 2010 at 12:02 pm

      [FONT=”Microsoft Sans Serif”]dawn– the snow i can deal with– it’s the rain that makes me feel the sky is spitting on me:cool: especially when it’s unnecessary–

      thanks for your PM’s–

      a.[/FONT]