SRM_BBC
New member
- Joined
- Jul 21, 2020
- Messages
- 7
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- UK
- State
- UK
- City
- Essex
I am a male in 30s and I have had muscle twitching, initially in my eyelids, since moved to diffuse twitching all over my body. This has been progressing for the last 12 months, with body wide twitching for at least six months. I have read the sticky notes in detail - thank you for the information on this. I am aware that muscle twitching alone is not a sign of ALS.
In terms of muscle weakness, there has been no obvious sign. I am very active (running, weight lifting) with no impact to strength or fitness. However, I have noticed a slight slurring of my speech with certain pronunciations - nothing obvious that an observer can see, but definitely something I have noticed over the last 3-4 weeks. I do not have cramps often at all.
My grandmother (maternal) died of MND when she was in her 60s. No genetic testing was performed.
I had an initial appointment with a neurologist today. Due to covid, this had to be performed remotely via telephone. He asked me a number of questions (Family history, signs of weakness, which side is my dominant side?, how often are the twitches and in which location, am I prone to cramps). I requested if he could put me forward for blood tests (per recommendation from my GP) and he said bloods at this stage are not important - and that he wanted to fast track me for an EMG for this Friday with "one of the best ALS specialists in the UK". He said he suspects something called benign fasciculation syndrome due to my age and explanation of my symptoms, but he wants to rule out ALS by making sure there is no nerve damage showing. This caught me by surprise as I was expecting to have some sort of vitamin b12 deficiency or thyroid problem.
So I open this thread firstly as more of a shock that I am being tested for ALS and secondly to document my journey in case this is similar to someone else that they can take either comfort from if it comes to something benign, or that it can at least provide answers if this story is similar to others.
I am lucky to have private healthcare in the UK so I can at least get answers relatively quickly and see the best specialists. It is looking likely I will have the EMG results by middle of next week and then I suppose I might have further tests from there including a potential face to face review - where he said he wants to look at my reflexes?
In terms of muscle weakness, there has been no obvious sign. I am very active (running, weight lifting) with no impact to strength or fitness. However, I have noticed a slight slurring of my speech with certain pronunciations - nothing obvious that an observer can see, but definitely something I have noticed over the last 3-4 weeks. I do not have cramps often at all.
My grandmother (maternal) died of MND when she was in her 60s. No genetic testing was performed.
I had an initial appointment with a neurologist today. Due to covid, this had to be performed remotely via telephone. He asked me a number of questions (Family history, signs of weakness, which side is my dominant side?, how often are the twitches and in which location, am I prone to cramps). I requested if he could put me forward for blood tests (per recommendation from my GP) and he said bloods at this stage are not important - and that he wanted to fast track me for an EMG for this Friday with "one of the best ALS specialists in the UK". He said he suspects something called benign fasciculation syndrome due to my age and explanation of my symptoms, but he wants to rule out ALS by making sure there is no nerve damage showing. This caught me by surprise as I was expecting to have some sort of vitamin b12 deficiency or thyroid problem.
So I open this thread firstly as more of a shock that I am being tested for ALS and secondly to document my journey in case this is similar to someone else that they can take either comfort from if it comes to something benign, or that it can at least provide answers if this story is similar to others.
I am lucky to have private healthcare in the UK so I can at least get answers relatively quickly and see the best specialists. It is looking likely I will have the EMG results by middle of next week and then I suppose I might have further tests from there including a potential face to face review - where he said he wants to look at my reflexes?