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Unintentional Fear Mongering on some Med Forums

I hope this post is understandable from the perspective it is intended. I felt this forum might be as appropriate as any other for posting these thoughts.

I know for a fact that my opinion that ‘some’ information on forums and websites is not balanced at times and causes unnecessary fears in some readers, is not mine alone. You can in fact find a great deal of information on this phenomenon by using “cyberchonria” as a search term.

For example: I did a search on muscle weakness and twitching and came across huge numbers of sites referencing ALS, a rapidly progressing motor neuron disease. It certainly is a real disease, as are other terminal illnesses but information on these needs to be balanced with ‘other possible causes’ of certain types of symptoms and balanced with facts of how common they are in relation to other disorders that cause similar or identical symptoms.

ALS for example affects an estimated 20,000 people in the U.S. (120,000 worldwide) but the more common peripheral neuropathies, of which there are over 100 types, affect an estimated 20,000,000 people in the U.S. (1,000 times as many) and these can all potentially present with symptoms similar to MND (motor neuron disease) and MS (Multiple Sclerosis), including muscle weakness (i.e. carpal and tarsal tunnel). Does this mean people SHOULD NOT be told about the possibility of having one of these diseases? Of course not – they should be told but that possibility should be given to them in-balance and with some perspective.

Telling someone with muscle twitches and/or weakness, something to the effect of “Oh my, you need to be evaluated for ALS because those are the symptoms it can present with” is tantamount to telling someone with stomach pain, that they might very well have cancer. Would cancer be a possibility in the case of stomach pain? Of course it would (so would IBS that affects 15 million Americans) in-fact people with no symptoms at all are at the same risk for cancer as anyone else and so are people who serve in the medical community. Cancer in-fact can cause neuropathy symptoms as well and the general risk for cancer is ten times that of ALS.

If you do a search of “anxiety stress muscle twitches”, people by the 1,000s, online are attesting to having Benign Fasciculation Syndrome, a disturbing but not harmful condition of muscle twitching and mild spasms and many were terrified they had ALS due to med searches they conducted online. Other forums such as ones on Generalized Anxiety Disorder and muscle spasms reveal the same thing and many of these people attest to muscle weakness as well. One writer for Associated Content site, has actually began trying to balance the “muscle twitches” issue in a series of articles they began writing after their own ALS neurosis, triggered by online search.

I had a MedHelp Dr. on one of the neuro forums to give me a wonderful, balanced answer to my questions about my own neuro-type symptoms and med tests, in-fact his answer is what inspired me in regard to balanced answers people need to hear when they are concerned about symptoms they are having, whether from medical people or laypersons (including fellow patients).

Thanks for the opportunity to offer this opinion that I feel is a valid one – appreciated!

(BTW: Cyberchondria is also referred to as “surf-diagnosis” and “availability bias” but despite this fact, good forums like MedHelp are extremely valuable for support and info.!)
Best Answer
1376893 tn?1278865778
LowMac, I agree with you entirely! I am new to the forums here but so far have not seen any of what you mentioned in the DA forum. Nonetheless, it is an issue across the web as a whole. I see my doctor so regularly that if something I see online is a concern, I ask her about it. I don't ask people on the internet whom I know nothing about.

This is definitely a place for support, not medical advice or a diagnosis. I will only offer suggestions (other than "see a doctor") to people who I can relate to; people who have the same conditions and symptoms as I do. People who are in a position that I, myself, have been in.

In the medical community, there is a saying: When you hear hooves, look for horses - not zebras. I try very hard not to be a fear monger. I bite my tongue and watch what I say. I don't even suggest "horses" - I say go to the doctor and find yourself a cowboy! (Haha! I just made that analogy up and I LOVE it! Feel free to use it =D ) I was tempted to tell a man over on the Neuro forum to get checked for MS but instead told him to ask a chiropractor about a possible pinched nerve. So proud of myself for reeling myself in on that one!

I can understand the desperation though. With so many illnesses associated with DA (and even just related like CFS, Fibromyalgia, Adrenal Fatigue, etc.) the sufferers are often alone. Personally, I LOOK normal. I still have a great personality and sense of humor. None of my symptoms can be seen by an onlooker. I have only had one positive test (tilt table). The outside world doesn't usually believe me. I am making it up. "You don't look sick/disabled to me..." Even doctors dismiss me as having depression and anxiety! It is lonely and frustrating. A little support and confirmation that you AREN'T crazy can go a long way!
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Avatar universal
Thanks for your comment, which likely adds better balance to my attempt at warning about "availability bias" (not my term). I made very sure to mention in my thread-starting post, that support forums for patients are an asset and I specifically praised MedHelp's contribution in this area but the post was still a bit misunderstood (not intentional).

I learned in the past that when I have a conviction to speak out as diplomatically and balanced as I know how and I don't obey that 'still small voice' in following through with it, I will regret it somewhere down the road. I actually have blogs and article sites I contrinute-to and will be adding the information to those as well but doing so on a med-forum, I felt was a valuable venue, especially on MedHelp. I think it's important, as you referred in your post, to be less concerned about how we might come-across as far as our status on forums or websites as in how it might affect those we are giving fellow-patient opinions to. Again, not stated because of any problem I have seen on this or other MedHelp forums but it is also important that it be kept the best support source and that cyberchonria has little or no opportunity here, as has been the case so far and that I know will continue to be.

I've been posting on MedHelp for so long (I had a different member name previously), that I remember when Dr. Mark Lupo came on board here as a Dr.-moderator at the thyroid disease forum. He posted previous to that as "Dr.Mark" and Cindy, one of the site owners became aware that he was board certified endocrinologist MD and he became official. I believe that was in 2004. The point being that Dr. Lupo was contributing his time before and for many years to-date after becoming a MedHelp forum moderator. He is an example of a doctor I wish could be my personal one but I live many states away from him.

Also, just to add - I mention being a publisher of patient advocate med titles but I also have over 500 online articles I've written since 2004. I didn't want it to appear that I'm marketing to fellow patients but rather venues like Amazon gave me more opportunity to reach more people. I consider what I do "a ministry" as I know the faithful members and forum leaders do here - or at least they consider their work of great importance.

Finally, microsoft conducted a study re: cyberchondria, led my a computer scientist with a medical degree, here is quote by him, that is also found on the New York Times site:

“People tend to look at just the first couple results,” Mr. Horvitz said. “If they find ‘brain tumor’ or ‘A.L.S.,’ that’s their launching point.”

It may seem at a first glance of this phenomenon that this is a rare happening but it is affecting an estimated "5%" of the population (per Associated Content), which is huge. This is why occassional reference/warning to it should be given in my opinion but without offending anyone.

Thanks so much for adding your comment.
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Avatar universal
The post I shared was an attempt to give comfort to those who through online search have come across worse-case scenarios for their symptoms, whether it occurs on a forum or even on the most reputable medical information websites.

Have I seen this occur specifically on this forum? Not once.

I believe with absolute conviction that the perspective I gave, needs added from time-to-time and if you'll note, I specifically praised the fact that support and information forums exist. I personally love them and I mention in my post MedHelp forums being the best.

I had a friend who committed suicide because he believed he had cancer developing in his leg. It first of all shocked me beyond belief but it also made me crumble for a while emotionally because I had opportunity (even felt impressed to do so) to comfort him in the fact that he should not fear the worst but wait for more evaluation.

I also used to be a moderator of a thyroid disease forum and a lady who was posting there for her daughter, at one point, let the members know there that her daughter committed suicide due to severe anxiety symptoms from Graves' disease and believing after many months of struggle that her case was not treatable and she simply could not take the pressure. This broke my heart beyond description.

If you do a search on cyberchondria (films on the subject are available on YouTube), it will give you a better sense of how serious the phobia from imbalanced info on symptom searches can be. I'll give one more example; I read a thread posted by a man who was experiencing muscle twitching in one leg but reported no muscle weakness or athophy and the response he received was "That is concerning for ALS". I actually mentioned this in a post on MedHelp not long ago that predates the above one I posted here. As you know, ALS is a 100% fatal disease and most patients succumb to it in 2 to 3 years, with only a few going as long as 10 or even longer (rare). Can you imagine the potential anguish that might place on such an individual?

My post, which was lengthy for the very purpose of attempting to not be misunderstood, was specifically to state that balance and perspective needs maintained in info and support forums. I actually published an article to this same effect in a newspaper just a couple weeks ago. I can absolutely assure you that this is a problem in some circles but again, I have not seen it at MedHelp and is also a reason I felt it to be a superior forum, for expressing the info.. If needed, I'll be glad to document it further if it seemed I was exaggerating the issue - let me know.

You people are exactly what those out there seeking support are needing and if I somehow made it appear that this was not the point I was trting to get across, I offer my apologies.

I don't want to at this point, go too much into my background but I'm in the same boat as you. I'm a "patient advocate". I have corresponded with 1,000s of patients since 2004 and I'm an author of 37 medical titles, all found on Amazon. I learned about trends over the years and one that has proven to be detrimental to the emotional health of some patients, has been the cyberchonria issue. Despite this, I am 100% for self-education in-balance and support forums and I always will be.

Thanks - I hope this helped to perspect my earlier post.
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Avatar universal
As a co-community leader on this forum and as an individual whom has been a member of this community for a while now, I have to say that I believe this forum to be an excellent place that offers reassurance, support and personal experiences.

I agree with your statement that some information on some forums on the internet may be unbalanced, but I must say that I find this site to be one of the most balanced and informative (sorry, but I to may be biased ;)

May I ask if you are referring to our forum in particular or to medical forums collectively?

I have found that a high percentage of people visit communities like ours (Dysautonomia)as a last resort.  Mostly when they have been tested for the 'more common' conditions and are being turned away by their doctors or literally given up on.  I myself was one of these people.  I have had symptoms for just over 8 years now and have been severley affected by these for over a year.  My local doctors could not figure it out, they didn't know what to do, and even when tests showed what was going on they did not know how to read it or how to treat me.  This community helped me through and began educating me on what was happening to me!  9 out of 10 doctors I see ask ME how to treat ME, as they are more commonly educated on the 'more common' conditions - it is often that a 'rarer' condition is overlooked as the probability is low.  This causes undue stress, frustration, suffering amongst some.  Then a lot of the time symptoms are told that they are Psychological when infact they are not, there is another valid underlying reason that is not being looked for.  A common factor I have found here on the Dysautonomia forum is that members have undergone much testing and all shows as 'normal' - but they know themselves something is wrong.  They have gone from being functional to disabled in a matter of hours (this is what happened to me).  If it was not for others whom have experienced and have knowledge of these rare conditions many looking for answers would continue in 'limbo' land.  

Although I can relate to some of what you are saying and I believe in the freedom of expressing ones opinion, I also believe that on this forum we try our best to support and advise our members the best we can.  

Kind Regards

x


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Avatar universal
I was also baffled why this was posted on this forum.  I don't think it applies here at all.
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612876 tn?1355514495
Do you feel that you've seen this issue happening in particular here on the Dysautonomia forum?

I may be biased as one of the co-community leaders of this forum, but I know that I make every effort NOT to suggest anything that in my opinion seems disproportionate to a person's reported symptoms.  I also try to speak up if I see others perhaps over-zealously recommending testing (for example) that in my opinion doesn't seem warranted by what a person is describing, or would only be warranted by positive results on some other less "rare" testing.  

I know I'm not the only one here who tries to calm frayed nerves and remind posters in our community that more likely causes for symptoms are ruled out before less likely causes are explored, and that there is generally a specific sequence for various forms of testing that is followed which is logical in terms of looking for rare diseases last and also managing costs (why pay for a costly rare test if a less expensive common test can identify the problem first).  I can't count the number of times I've seen our veteran forum members back a poster up and ask first and foremost "are you diagnosed with autonomic dysfunction?" when a poster is already running wild with concerns about umpteen different tests that really are only appropriate *after* an initial diagnosis has been confirmed.

While I agree that there is a risk of people mistakenly thinking they have a diagnosis after reading about it online, I think that the value of having information readily available *far* outweighs the downside of this risk.  The statistics on the time delay from onset of illness to the time of correct diagnosis for many rare diseases are absolutely ABYSMAL.  (In some cases a decade or more!)  I should know, I have two rare diseases myself.  Informed patients can quite often set the wheels in motion to significantly shorten this timespan and hasten their path to diagnosis and—most importantly—the onset of treatment and the path to an improved quality of life.  I'm sitting here typing to you despite symptoms from a fresh head injury including headache, nausea, essentially lost vision in one eye which is causing me to have to wear an eye patch and only use my other eye to see at the moment, and aches and pains from head to toe ... because I *believe* with every bone in my body in the value of what I do here.  I would not have been able to advocate properly for my own health care without the information I was able to access through talking to other patients online, reading websites about dysautonomia, and reading medical journal articles online.  I would be remiss if I did not pass that knowledge on to others who are struggling to find answers.  Dysautonomia patients may be "rare" but each and every one of us MATTER and we deserve to have access to information and support.

Likewise, every other support community on MedHelp.  Do we always succeed in convincing people who likely don't have condition X that they might be barking up the wrong tree?  Probably not.  I would argue that for people with that level of anxiety about their symptoms, it may even be difficult for their own doctors to convince them of the true nature of their condition.  If you want proof positive of this, do a little research on ectopic heart beats/PVCs.  Cardiolgists spend a TON of time trying to convince patients that their benign PVCs are just that:  benign.  But a significant portion of patients have ongoing anxiety about the sensation that accompanies the PVCs and may even go from doctor to doctor looking for a different answer.  Sometimes a patient's gut feeling that a doctor is wrong is the thing that will save a patient's life.  Sometimes it's just the thing that will be costly to their insurance company or their pocket.  Patients are only human; it's hard to know the difference sometimes.

In short, I don't disagree that there are some people who will use available information to fuel anxiety that their symptoms may be more insidious than they actually are.  (I'm not fond of the term "hypochondria," though.  Having unexplained symptoms makes people anxious—period.  I don't think there needs to be a character judgment attached to it as though it's some sort of personal failing when a person gets overwhelmed by this anxiety.  Most likely the person needs help, not condemnation.)  I do disagree that our forum here is any more "guilty" of fueling unnecessary anxiety than any other online medical information outlet, in fact, quite the opposite.  Moreover, I think the value of making information openly available in a format accessible to laypersons outweighs the downside of possibly fueling anxieties in people who are prone to jumping to the worst possible conclusion about their symptoms.  
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