On the internet all roads lead to ALS...

MightyB · 11-14-2009, 02:55 PM

Hi all,

I'm a long time reader of these forums but this is the first time I've felt inclined to post in response to the many, many people who appear to be using the internet as their 'reliable' source of information.

I have been recently diagnosed as having Hereditary Spastic Paraplegia, a condition which has many of the same symptoms as ALS but a very different prognosis. Although it is likely that I will be unable to walk in a few years, that is the extent of my worries; not too bad an outcome in the grand scheme of things! This diagnosis has taken almost 3 years to get to and, in the meantime, I've been suspected of having many conditions including MS and MND (ALS).

If you look up the symptoms of HSP on the internet, you will almost certainly get a response that these symptoms are ALS; HSP is mentioned at the bottom of any lists of illnesses. Although ALS is a comparably rare disease there are absolutely hundreds of other conditions out there which mimic one or more (or even all) the symptoms of ALS but the internet always pushes this as being the first condition you have.

We need to realise that middle of the night, internet induced hypochondria is making our lives miserable and, even if an eventual diagnosis of ALS is forthcoming, think of all the hours wasted in worrying about this when we should have been making the most of our lives while we can.

On the internet every headache is a brain tumour, every stomach ache is cancer, indigestion is always a heart attack and every muscle twitch is ALS. If you are genuinely worried about ALS then you need to get to a neuro, get it sorted and then spend the rest of your time enjoying what time you can in the light of a diagnosis, whether this be ALS or something as simple as stress (or HSP!).

As an aside to this, thanks to all members of the forum. Although I don't have ALS I share a lot of similar symptoms and I find your hints, tips and sense of humour a god send!

BarryG · 11-14-2009, 03:23 PM

Hi MightyB, welcome to the forum. Great post, this is an issue that those of us who have been on here for a while deal with pretty much every time we sign on. A while back I started a thread called Cyberchondria about how the internet is self propagating in that the more people search the more that they find. Having all of this information at our finger tips is a double edged sword, we can find all kinds of useful and harmful information at all hours of the day but the trick is to know the difference. Here is the link:

Cyberchondria

Barry

BethU · 11-14-2009, 09:38 PM

And thanks to you for your very insightful posting. I only wish it were the first link to pop up on Google!

Good luck with your HSP. It doesn't sound like a lot of fun, but glad you finally got a dx and can handle what's down the road.

Enjoy today! It's all we've got.

bythesea · 11-15-2009, 01:08 PM

Thanks for the hopeful post.

I rather new to this forum myself and don't plan to post thousands of times...yikes you guys!

Like you I share many ALS symptoms but this disorder kinda fits the bill for me because and falling have become synonymous for me.

The internet searching had me leaping and freaking as well.

Why does it take so XXXXXXXX long to diagnosis this XXXX (bad word)

As you might say, "buttocks"

Somebody's medicaid tab is going to be long

bythesea · 11-15-2009, 02:09 PM

I think the word I was looking for was bollocks

Dumb american

GlenBrittle · 11-15-2009, 03:05 PM

Well , you don't see that everyday. Al should put a sticky on this post.

Well said MightyB , well said.

Welcome to our site . Please continue to post your thoughts and I hope your HSP finds a plateau to sit at for a while.

Glen

bythesea · 11-15-2009, 04:17 PM

MightyB ,

Have you run across a number stating how prevelent Hereditary Spastic Paraplegia is?

I believe I have seen numbers for ALS as being 1-2 cases per one-hundred thousand

bythesea · 11-15-2009, 04:23 PM

Answer to my own question

Wikipedia states "Worldwide, the prevalence of all hereditary spastic paraplegias combined is estimated to be 2 to 6 in 100,000 people."

which would make it more common than ALS, as much as 3x more prevalent.

MightyB · 11-16-2009, 04:59 PM

You're absolutely right; HSP is many times more prevalent than ALS so it always seems odd to me that when you feed the symptoms into any medical website it always throws ALS up as a possible cause, never HSP (or many other causes) which are statistically more likely.

Good luck with getting a diagnosis - it can be a long time coming unfortunately. Not sure what things are like in the US, but in the UK the doctors have a horrible habit of telling you the worst case scenario the first time you see them. On my first neuro visit I was told that he was 70% certain I had MS but there was a 30% chance it was ALS. You can imagine my internet use went into overdrive the minute I got home! It was only after about a month of upsetting myself and everyone around me that it dawned on me that I was wasting hours of my time researching things even my neuro wasn't that sure about. I was also starting to feel that I was imagining more symptoms than I actually had; my restless legs (which I've had since I was a kid) suddeny became a symptom of a serious illness rather than something I had lived with all my life. It was at that point I decided to stop looking. Instead of trawling through the internet I decided that I would be better off spending my time making an accurate symptom diary so that next time I saw the neuro he had some really good info. It was only by doing this that I eventually managed to get an accurate diagnosis - if I hadn't done this I might still be waiting.