Danger of online health forums?

[jumpwomble]

Have any of you guys experienced this?

You think you have a health issue. You go and post (or just look up) your symptoms on an online health forum. You find a poster who describes a situation very similar to what you have, and then you find out a few posts down that they were told they were incurable, had a month to live, or some such frightening thing?

???
:shrug:

jumpy

[fozzy is crying]

Nope I see my Doctor.

The internet is just like the Bible if you look at it you can justify anything, find different interpretations, inaccuracies and misleading information. Using search engines to get anything like a reasonable feedback is something that requires skill to word the search properly.

[jumpwomble]

Yes, I am aware of this. It's the reason that many of us end up having so much health anxiety.

For example, one of us might seek reassurance by searching for a particular condition in a health forum. Then we read some answers or posts, saying that they had this-or-that tumour or awful growth (when what you were searching was rather less serious to begin with). And then you start to worry about having that instead, and your mind has another crazy thing to focus on!

Sometimes I think we should have internet-free days just to give our minds a break!

jumpy

[kirstynic]

Hi jumpy

Yes I do exactly this too much, it's the trying to seek reassurance but ending up feeling worse part of my health anxiety.

[fozzy is crying]

Yes, I am aware of this. It's the reason that many of us end up having so much health anxiety.

For example, one of us might seek reassurance by searching for a particular condition in a health forum. Then we read some answers or posts, saying that they had this-or-that tumour or awful growth (when what you were searching was rather less serious to begin with). And then you start to worry about having that instead, and your mind has another crazy thing to focus on!

Sometimes I think we should have internet-free days just to give our minds a break!

jumpy

Very true. What I think makes it worse is when it is down for anxiety and people have had the all clear from the medical profession they often seek via the internet something to disbelieve it. Anxiety for some reason fosters a level of not trusting the experts. Even worse in a panic situation why do some people spend so much time looking for the answers on-line instead of doing the logical thing and going to see the Doctor. If someone is panicking and in so much fear the systems are in place to get NHS medical help 24/7. We are not living in a third World country.

[Annie0904]

I always seek advise from my doctor about symptoms and if I see a thread and think that it may be a trigger for me, then I don't read it. I have learnt not to look up my symptoms online. :)

[jumpwomble]

Annie, I would love to know how you avoid reading some posts that you know will trigger off anxiety.

For me, I am drawn to those posts, I can't ignore them because if I do, I obsess endlessly about what they might say and what important info they might hold for me!! I actually start to feel like I am in denial unless I read those posts.

I am my own worst enemy?

Jumpy

[Annie0904]

The only one who can diagnose you is your doctor, he is the only one who can examine you and test you so why look elsewhere? Would you ask a gardener for advise on what is wrong with your car or would you ask a mechanic for advise on plants? No...so why ask people with no medical background and do not know you for advise on medical issues. xx

[fozzy is crying]

The only one who can diagnose you is your doctor, he is the only one who can examine you and test you so why look elsewhere? Would you ask a gardener for advise on what is wrong with your car or would you ask a mechanic for advise on plants? No...so why ask people with no medical background and do not know you for advise on medical issues. xx

Very well said. I could not have put it better myself.

[almamatters]

I'm afraid goggle is responsible for most of my HA. Diagnosed myself with a brain stem tumour earlier this year, even told the GP and that the prognosis was 3 months to live. I regret this so much as have not really been taken seriously since then by them. My MRI scan was clear, but still I feel they may have missed something. I have not learnt my lesson as still goggle now and then, despite best efforts not to. Currently have bowel cancer, liver cancer , lymphoma and possibly inner ear trouble due to google matching my symptoms up.

[jumpwomble]

I don't ask people for help on health forums but I can't help reading other peoples posts, thinking they sound a bit like me, and then reading responses from other people who have had something similar, but some with terrible outcomes or causes I had not even thought about!

I guess I don't feel like I can trust my GP. :( it is terrible but I have rarely gone to my GP and the very few times I have gone, he couldn't get to the bottom of my troubling symptoms. I actually got the idea to visit a physiotherapist from reading some online boards, and that sorted me out, so I have come to rely on health boards rather than my doctor.... I know its silly but these things tend to have an emotive basis.
Jumpy

[fozzy is crying]

I don't ask people for help on health forums but I can't help reading other peoples posts, , and then reading responses from other people who have had something similar, but some with terrible outcomes or causes I had not even thought about!

I guess I don't feel like I can trust my GP. :( it is terrible but I have rarely gone to my GP and the very few times I have gone, he couldn't get to the bottom of my troubling symptoms. I actually got the idea to visit a physiotherapist from reading some online boards, and that sorted me out, so I have come to rely on health boards rather than my doctor.... I know its silly but these things tend to have an emotive basis.
Jumpy


I think you have put your finger on it. "thinking they sound a bit like me" and "I don't feel like I can trust my GP". This seems to be the overriding attitude to so many on here. The trust thing I am sure is perhaps because the GP does not agree with the patients self diagnosis.

[almamatters]

You are so right Fozzy, because the GP does not agree with whatever current disease I say I have then I begin to disbelieve them and in fact I get very upset and feel they are not taking me seriously. I can't seem to help telling them what I have instead of the other way round!

[fozzy is crying]

You are so right Fozzy, because the GP does not agree with whatever current disease I say I have then I begin to disbelieve them and in fact I get very upset and feel they are not taking me seriously. I can't seem to help telling them what I have instead of the other way round!

True. It is a pity we are at the top of the animal genre and can talk. A vets patients do not have this disadvantage and do not have a trust problem. Their medical expert just gets on with it.

[jumpwomble]

Well, actually this is not necessarily true for some of us with HA. While I will admit to possessing an inherently nervous disposition, I believe that my doctors had some part to play in my loss of trust in their judgement. People develop HA for a wide variety of reasons, after all, and it's not always because they were always overly anxious to start with.

Over 10 years ago, I presented a rather vague and dreaded symptom to my GP. I found myself feeling very dizzy for a few minutes and afterwards, felt disoriented and unsteady for a good while. This happened off and on and was not associated with any cold/viral infection I could recall. My GP said it was probably labyrinthitis and would clear up on its own in a few weeks, and prescribed me anti-psychotics to deal with the dizziness!

It did not clear up and in fact, became worse. I experienced full days of muzzy-headedness when I could not turn my head too quickly for fear of going dizzy... when this went on for too long, my GP sent me to an ENT, let's call him ENT No.1. This guy conducted a series of tests on me, hearing tests etc. and declared everything normal. He said that I probably had a case of vestibular neuronitis (inner ear infection) and there was no diagnostic test for it, it was just a disease of exclusion. He said I would eventually regain my balance as it took months for the brain to recalibrate itself, but it was nothing to worry about.

So, more waiting, while my dizziness persisted and sometimes got worse and I got nervous of even crossing the road because I was afraid of turning my head too quickly. Then I started experiencing vertigo when I got up in the mornings, or sometimes when I rolled over in bed. This was most frightening ever - feeling the room spinning violently when you're lying still!!!! I would also become extra dizzy while in supermarkets - something about the lighting would make me feel unsteady on my feet. I wasn't a HA sufferer then, but I can tell you that having the dizziness/vertigo for over 2 years would make even the most chilled person a little nervous!

When I returned to my GP complaining of occasional vertigo attacks, they sent me on to ENT No.2. By this time I had started to google my symptoms (HA was starting!) and I was worrying first about a brain tumour, then Meniere's disease, then an acoustic neuroma. ENT No.2 ruled them out but then suggested BPPV, which was a benign condition that could cause vertigo. However, a simple diagnostic test in his office ruled that out also. I was in despair. I did mention to ENT No.2 that my vertigo would worsen after I'd been walking for some time and he just looked at me like I was crazy.

So, more months of wondering what my symptoms could be and reaching the end of my tether. I used to work intensively on computers and so spent all day on one. One day, while slowly leaning forward towards my desk, I was assailed by an attack of vertigo. I went back to my GP and mentioned this. My GP was probably sick of me by now, asking me if I wanted an MRI to rule out a brain tumour (I refused)! When I explained that I got vertigo when I leaned forward towards my desk, she suggested that I was possibly having a PANIC ATTACK. Now why would I be having a panic attack while sitting at my desk at work?! I think she sensed I was getting nervous and anxious by this point and was not taking me seriously. To tell you the truth, I felt really let down by this GP.

In the end, I went to the same clinic and saw a different GP. I was starting to notice that my vertigo/dizziness was brought on by my position, i.e leaning forward or turning over in bed. I'd looked it up online and found that dizziness could have postural causes. This GP was more open-minded and shrugged and said I could see a physiotherapist if I wanted. What did I have to lose?

The physio in the end, held the key to my problems! She explained that my neck and shoulders were extremely tight and knotted up-- because of my reluctance to turn my neck left or right in case it brought on more dizziness, I was in fact making the problem worse by knotting the muscles even more tightly. She did some deep tissue massage. In barely 3-4 sessions, my dizziness and vertigo completely disappeared.

Now whenever I feel muzzy or slightly dizzy, I always book an appointment with a physio to sort out the tight muscles in my upper neck. It is easily done in a session or two and I've been able to manage this situation for a long time now.

So, I felt very let down and disappointed in my GPs that they were more readily attributing my symptoms to my psychology than trying to find a possible physiological cause. I do know that it is a baffling symptom to diagnose and most doctors go for the most common causes... I just happened to fall through the cracks. But one or two debilitating experiences like these can trigger off HA in anyone, most certainly.... and it's not always because the GP disagrees with one's self-diagnosis. In my case, if I did not try to get to the bottom of it myself, I really think the GP would have happily prescribed anti-depressants, case closed.

I don't want to think and feel this way about my doctors in the GP clinic I'm registered at. I really want to believe that they can help and heal me. It's just a little hard... it's like being cheated on or betrayed by your partner, it takes a LOT of time to regain and rebuild the trust lost. It doesn't help that I also rarely ever see my GP - maybe once in 2-3 years at the very most. I consider myself in OK health and only see the GP when there is a real reason to - but then my HA kicks in when it is anything to do with my head/ears/sight and I tend to imagine the worst.

jumpy