MightyB
New member
- Joined
- Nov 14, 2009
- Messages
- 2
- Reason
- Learn about ALS
- Country
- UK
- State
- S. Yorks
- City
- Sheffield
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! :wink:
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! :wink: