Neuropathy / Health forums skew perception??
 

Hello,

I have been wondering if there is a danger that actively participating in a health forum over time can actually skew one's perception of how dire the situation could be for a prognosis.

In a nutshell, the majority of the posts are going to be from people who really have it tough or from people who are in a phase when they are really finding it difficult.

I know people do share success stories and stay to help others (which is important and really wonderful) but for the most part people are the most motivated to post when they need help. Once the situation isn't as bad then they happily move on with life. I doubt if people post "I am having a great day today" as much as they post their questions and frustrations.

For example, for many people chemo-induced neuropathy goes away. However, I bet those people have more posts asking about their concerns than later coming back and reporting that their neuropathy has gone away ... they have probably moved on and are off enjoying themselves rather than writing about enjoying themselves.

I am not criticizing health forums in any way. I just raise this point because it might be important to remind ourselves of this bias as we form overall impressions in the back of our minds about our condition while participating in health forums.

Any thoughts?

I think many of the forums, have these traits, here.

I have been here since the beginning of NeuroTalk...in 2006.
There have been many people who have moved on.

1) some receive results they can live with and don't post anymore.

2) Some become mired in treatments, or progression, and see no hope and leave.

3) Some get better and leave.

But I will say this, those of us who remain here do so out of
generosity and caring. I am retired now, and can devote a bit more time than others, perhaps. Now that I am a moderator, I do spend more time on all the other boards here, and do my moderator duties to keep NT a safe and helpful place. There are times I do find other posts on NT that are pertinent to PNers as well.

Much of what I find on the net, is applicable to my life, my family, aging and pets. I enjoy some of the social posts too.

Some of our supplements used for PN will also enhance quality of life in other areas of health as well. I am also very grateful to the members here now, and past, who have found treatments and remedies and shared them here, so that many others can benefit.

Low B12, low magnesium and low Vit D plague all adults in this country, not just PNers. I hope our collected information therefore gets shared with doctors, and others that our PNers then take, and then that may move further out to new people as well.

I have brought Benfotiamine here (actually from our previous home which crashed in 2006). I've expanded Rose's B12 information and answered questions that have arisen over the years, I've been posting about magnesium for over a decade online. There have been many people here on NT and I always encourage members to use our search function, because the past still holds interesting and useful experiences which may help someone today.;)

You may be correct, I am new here and have a pretty scary MRI; yet I am fairly optimistic about the future. I am not getting a lot of feedback, lol.

I think it's less likely over time than it is in the short run, for exactly the reasons you state. This is a self-help peer support group. People are here because they need/want support. Lurkers/onesies may get skewed perceptions, but longtimers—for the most part—know the score, and are here because they need/want to be.

Some first-timers come in, ask a question or twenty, and then bail, either because they get the answer(s) they want, or because they don't get the answer(s) they want, because they can't handle things, or it's just not for them/what they need. That's cool. :cool2:

For long-timers, it's (apparently) exactly what they/we need/want.

There's no rule/law that one has to read every thread/post, much less every forum.

I also participate in the Spinal forum. Many people come there who are afraid of impending surgery due to the "horror stories" they read online. I often point out exactly what you say—people who have bad experiences tend to post to groups like this, partly out of the frustration of no-one else listening. People whose surgery is successful are out getting on with their lives—they have no need of support, hence no need for forums like this,and no need to tell the world. So yes, perceptions can be skewed. I think acknowledging that fact is important to newcomers; it bestows/sheds light/hope.

I think the same can be said for most of these groups. Some stay for continued sharing (paying it forward) some stay for the fellowship/camaraderie, and some stay for the pie. :D That's cool too. :cool2:

Doc

Please remember this is a peer support group... posters expecting a diagnosis/prognosis really will not find those details.
We have a few people here familiar with MRI jargon, etc, but not many.

Secondly, if a poster has an unusual condition, where not many people receive that unusual diagnosis, there won't be many responses here.

When posting it is best to put a good keyword into the title of your posts...this is then picked up by the automated bots and then appears in Google, Bing or whatever searches. Many people come here thru searches that way.

For the most part, I think most posters leave after a while, for whatever reason. It takes a strong person to read about other people's pain and misery, and remain strong themselves. Misery compounds the reader's own pain, in many cases. This is why you find many off topic posts on our forums, as a relief and safety valve for reading depressing painful struggles all day long. I feel this especially because I don't just read PN forum, I read ALL the forums!

Thanks for all your thoughts. It just occurred to me that this might be a topic worth posting for people to keep in mind.

Mrs D .... I think everyone is eternally gratefully for all your work. There are a lot of people who are much better off because of your help.

I've been participating on the MS forum for years now.

Many new posters that come to NT for MS are in the beginning stages of the disease or of their diagnosis.

The majority of them are scared and anxious and want answers NOW. Unfortunately, MS is a disease that is diagnosed through the process of elimination. Many other diseases mimic MS and it's important to get the correct diagnosis.

There are several posters on MS that have had the disease for years and can offer invaluable support and information.

Even those of us who have had MS for years still find help and answers to questions especially on the new meds that are coming out now.

It's important to keep your perspective when dealing with chronic and incurable diseases. We try very hard to keep each others spirits up during the trying times.

Some will come to NT and receive the answers they're looking for and leave. Some will keep coming back in order to receive the constant validation and support from others who can understand. This is a peer support group and we all try to help others regardless of the place they're in. :)

While most come looking for answers and yes reading it can make you scared it can also put things in perspective where you are not as bad of as others. Forums always have the worst as people are looking for help. They also can provide support and understanding.
The same thing often happens when you DR Google. The worst is easy to find but at lest you know.

I don't see it as a bad thing but a way of going see I can't be to bad plus getting information can remove the stress and fear.

Knowledge is power. That's what us CMTers say. I have been a member of NT and participating for years and the one before.

This is another interesting conversation, and one of my favorite aspects of the forum are discussions like this. I do not think that overall this is a depressing place, or that we present too dire a picture. Neuropathy is so varied in its causes and presentation that forums like this are an invaluable help in figuring out how to mitigate and live with the disease. Doctors, even neurologists, are not interested in the specifics many times, and they certainly do not want to get into lifestyle, nutrition, or supplements which may help.
Those of us who have been on for a while can sometimes recognize when someone comes with symptoms that point to a specific cause, as in hereditary neuropathies. While that is a progressive and untreatable disease it is helpful to know that others are coping with it, in my case with the help of pain medications which preserve a reasonable quality of life.
Even those who come here mostly to relate their symptoms hopefully find that writing about it helps to organize their thoughts and sometimes a knowledgeable member will point out symptoms which may actually indicate a different condition which should be checked out.
At the very least sharing with each other here keeps us from boring our families and friends!

Thanks V5 for a thought provoking thread.
I remeber when I first started the journey 7 years ago and started to really immerse myself in PN forums. I did find after a while that life was going to be pretty grim. Did I need to know that at the time? Actually the answer is no because I did a hell of a lot of worrying basing my future on information that was mostly posted in state of deep desperation.

I remember at one stage I started getting the same symptoms I would read about within a few hours:( for example someone saying their left elbow was getting numb would trigger mine. I left the forums after one fellow told of his groin going completely numb :eek: but of course that had nothing to do with it , it was just my PN progressing naturally.

:Ponder:.... I think I bore them more talking about some of the things brought up/going on here... :rolleyes: :p :D

Doc

I am one of those people--
 

--who originally came to forums such as these looking for information/answers regarding an unusual presentation of neurological symptoms (acute onset full body burning neuropathy), who did get some info that was useful, but appreciated the support and commiseration even more, who became a severe autodidact regarding neuropathy and so became able to share and "pay it forward", and who did get considerably better (acute onset neuropathies have more potential to lead to at least some recovery--but, of course, I have all sorts of other interesting medical issues, such as hyperparathyroidism and pudendal issues, which may or may not be related, and which are useful to me to discuss with others too). I stayed here and come on to the boards every morning, though, because I felt the responsibility to share the knowledge I gained with people who came here searching, who were in earlier stages of the condition, or who were just not well versed in neuropathy.

The latter situation is very common; though neuropathy sufferers outnumber multiple sclerosis, Parkinson's, ALS, and epilepsy sufferers combined by a considerable margin--it is estimated that one in 20 people may suffer from it in their lifetimes--neuropathy is the "neurological condition nobody knows". Partly this if due to the fact that neuropathy is often treated as a syndrome that is caused by and secondary to something else--diabetes, toxicity (chemotherapeutic or environmental), nutritional, autoimmune, etc.--but part of this is due to the lack of publicity, both in the medical community and in the general media, about this "less than sexy" condition. And, as I have ranted about here quite often, we don't seem to have famous celebrities with this condition bringing knowledge of it into the mainstream discussion, as Michael J. Fox has done for Parkinson's. It's not that there aren't celebrities with neuropathy--Mary Tyler Moore, Glenn Beck, Andy Griffith, Johnny Cash, Bobby Short, Dolores Hart, etc.--but it seems these people don't go out of their way to shine a spotlight on it. I once made a joke that given the averages ages of members of Congress, I suspected there was a lot of neuropathy there, but I doubt anyone has heard representatives pushing for more research into it the way they often push for funds for research into PTSD, MS, and the like.

The Internet has helped, of course--we now have information at our fingertips that thirty years ago we would have had to go to a medical library to access, if we even could access it--but forums such as this are very valuable for both support AND information dissemination, as I find the newer social media outlets such as Facebook deficient in their abilities to present and evaluate complex information about conditions, despite the number of people present on them. Forums such as this fulfill that function much better, in my opinion. The trick is to get people to find us and to contribute with more than 140 characters (you can often tell the initial posters here who think this is like Twitter or Instagram and leave very short, cryptic and hard to interpret communications).

Well said Susanne. :winky: And with CMT we are going thru one stage of grief or another all of the time. This is due to the fact that CMT is progressive no matter what we do. And so we are constantly losing something we could do before. You can always tell when someone asks about it be it a family member or not and you tell them only as much as you can see they want to know. When their eyes glaze over, some in short order, you drop it. I never go into any detail unless they ask more questions. Some do and some do not.

I never have trouble with my family members as it is in my family from way back. They have seen their grandmother and me with it. I saw my grandfather with it I was young but I remember. I have researched, learned about it from reputable sources via snail mail to start with and then the Internet with reputable sources. It is not new to me at all nor my family. There are now over 70 kinds of CMT identified so far and there is no end in site. The type of CMT in my family is one of the most common types. If you know CMT, you can spot it in a minute when someone comes walking into a room. Or you see it in their hands or both their hands and feet. CMT is a complicated syndrome for sure. Much research is being done concerning it.

Thanks for everyone's replies.

I was a little nervous posting this topic in fear that in print it would come across as criticizing this forum or forums in general.

In fact, I am incredibly grateful for this forum and have a long list of reasons why I think it is wonderful.

I just thought it might be useful to ask ourselves questions like this occasionally.

Thanks again,

Natalie

Pretty much agree with what everyone has said.

I came looking for info and help. I stay because I still find help here, even if it is just reading old posts. I stay because the support is amazing, it is nice to have others who actually understand what I am going through to share with, even if its a cyber hug. I feel I can say more here than in my real life, as people here understand. I stay to help others in any way that I can, even if its just a cyber hug, or a story that may relate to help them, or quite simply to know who else to pray for. I stay because I have learned empathy for all who live with daily pain and to remind myself it is not just about me. I stay because it has become my PN home.