daviesimmin
New member
- Joined
- Jul 17, 2016
- Messages
- 9
- Reason
- Learn about ALS
- Country
- UK
- State
- West midlands
- City
- Birmingham
Hi people, I was wondering if I could get some advice as I am in a bit of a state since the neurologist I saw lately thinks this could be MND/ ALS, but from my reading around the internet and even reading your stickies it really doesn't add up fully, and I've been left in a bit of ... a mess I guess.
I am 25 years old and 3 months ago exactly I noticed twitching in my legs, which has spread all over my body (including my tongue which twitched a few weeks back for a minute or two). My legs (calf and thighs twitch non stop all the time, and sometimes wake me up). I saw a neurologist a month into it and he said it was benign fasciculation syndrome and said no need for EMG?! I then saw another neuro on Friday because I was still worried, who said he thinks this could be the start of MND !
I was still anxious but took his word, but then about a month ago I started getting a really sore tongue and felt as if I was struggling to speak, all my friends said I sounded absolutely normal and still do say I sound fine. my tongue feels to big for my mouth and I occasionally catch it with my teeth but this sensation does come and go along with the aches in it. Can anyone clarify if this sounds like bulbar onset? as neuro seemed a bit concerned by it but did say he saw no atrophy, and I could do all the movements he asked.
I also have a horrible sensation at the back of my throat as if I need to clear my throat, which he mentioned may turn into difficulty swallowing, and since I have coughed a few times drinking fluids.
As I mentioned I twitch constantly in my legs, literally 100's a minute sometimes and randomly around my body, some which may last a day or so then disappear. I passed all the strength tests with first neuro and the second neuro. I am also a weight lifter and have noticed no difference in my strength, which I thought after 3 months I should be? even just a bit.
Both neuros said I have brisk reflexed in my knees, which really worried the second one, but the first said anxiety and cause my muscles are strong they kick more?! or something.
I have been reading the internet for answers and although my symptoms match a bit to MND they don't fully and I asked some people who saw neuros at top clinics who said it barely ever starts with twitching and young strong people, they always see weakness or performance issues first because of how the disease works.
Can anyone advise me what to do or even give me their thoughts if they think or have heard of als starting like this? I am depressed about this and not sleeping and feel lost. the second neuro has booked me in for a EMG but I am on waiting list.
I am 25 years old and 3 months ago exactly I noticed twitching in my legs, which has spread all over my body (including my tongue which twitched a few weeks back for a minute or two). My legs (calf and thighs twitch non stop all the time, and sometimes wake me up). I saw a neurologist a month into it and he said it was benign fasciculation syndrome and said no need for EMG?! I then saw another neuro on Friday because I was still worried, who said he thinks this could be the start of MND !
I was still anxious but took his word, but then about a month ago I started getting a really sore tongue and felt as if I was struggling to speak, all my friends said I sounded absolutely normal and still do say I sound fine. my tongue feels to big for my mouth and I occasionally catch it with my teeth but this sensation does come and go along with the aches in it. Can anyone clarify if this sounds like bulbar onset? as neuro seemed a bit concerned by it but did say he saw no atrophy, and I could do all the movements he asked.
I also have a horrible sensation at the back of my throat as if I need to clear my throat, which he mentioned may turn into difficulty swallowing, and since I have coughed a few times drinking fluids.
As I mentioned I twitch constantly in my legs, literally 100's a minute sometimes and randomly around my body, some which may last a day or so then disappear. I passed all the strength tests with first neuro and the second neuro. I am also a weight lifter and have noticed no difference in my strength, which I thought after 3 months I should be? even just a bit.
Both neuros said I have brisk reflexed in my knees, which really worried the second one, but the first said anxiety and cause my muscles are strong they kick more?! or something.
I have been reading the internet for answers and although my symptoms match a bit to MND they don't fully and I asked some people who saw neuros at top clinics who said it barely ever starts with twitching and young strong people, they always see weakness or performance issues first because of how the disease works.
Can anyone advise me what to do or even give me their thoughts if they think or have heard of als starting like this? I am depressed about this and not sleeping and feel lost. the second neuro has booked me in for a EMG but I am on waiting list.