Hi all,
Ive been away for a while (a year prob.), but I still follow the discussions once in a while. I am now twitching for 1.5 years on end already, no signs of weakness or anything indicating MND, so pretty safe by now after some scary first months.
I like to add this to the discussion:
The 6.7% is the percentage of MND patients who had twitching as their first (presenting) symptom.
= how many MND-ers twitched first.
From the Hart article: 2 out of 60 (?what was the exact nr?) people = 3% presenting with twitching at a neuro clinic appeared to have MND.
= how many twitchers have MND.
Two very different numbers.
I read the Hart study as follows (my words): all people entering the clinic with twitching symptoms were initially included in the study, from which 2 were excluded later from further follow-up, because they were diagnosed with MND. Thus, the 2/60 = 3%, is the percentage of people presenting at a neuro clinic with twitching symptoms, who are then diagnosed with MND.
Compare this (only an example):
1. 30% of people with pneumonia have fever as their first symptom.
2. Of all people seeing a doctor for fever, 5% appear to have pneumonia.
The percentage 2/60 in the Hart study is a VERY interesting one for people who twitch - but have not yet been diagnosed - for it indicates the probability of having a MND, knowing they are twitching.
It only means that when you are twitching a lot, there is a chance that you may have some form of MND. I read a Dutch study stating myokimia and fasciculations ARE frequently seen as first symptoms of MND (not always accompanied immediately by weakness - i am sorry but this is what it says -) though MOST of the time weakness and/or instability is the first symptom. This is all not in contradiction with other studies.
By the way statistics is a freaky thing. For example, the incidence of ALS is about 2/100.000. That sounds like almost nothing. But suppose you live 70 years, this amounts to a chance of aquiring the disease once in your lifetime of 1:714. This sounds a lot worse.
So the probability of dying from ALS is about 1:700. It still means that ALS is very rare, when you compare it with the chance of dying from cancer (1:4), which is 175 times more probable. Now does that sound like a comfort or not to all the worrying people on this forum?
poppo_w
