Sheeks
Member
- Joined
- Sep 3, 2018
- Messages
- 14
- Reason
- Learn about ALS
- Country
- Aus
- State
- South Australia
- City
- Adelaide
Hi I am new to this forum and I have had an interesting 2018. I am a father of 4 girls under 10 and am 36 years old. I will premise this by explaining that I had torn tendons in my right ankle for the first 6 months this year and just in August had surgery to repair them and currently in a moon boot for last 3 and half weeks. ( this will be clarified further down.
Earlier this year both my right and left calf muscles were tight for no particular reason to the point where they were sore to touch and I was applying deep heat to relieve them. This pesrsisted for a few days and finally subsided. Then in late April I noticed one morning upon waking up that both calf muscle were twitching like crazy (I mean crazy). The twitching at first was only annoying and more noticeable when lying down. This prompted a visit to a neurologist who conducted a nerve conduction study NOT A EMG which I thought was the same thing up until the other day. This was 4 weeks from noticing twitches. The NCS was fine and he just looked at my calves, banged my knees to watch reaction but conducted no strength test. His conclusion BFS due to anxiety,
He order a CT of lower back and bloods. And to come back in about a month. About a week after I noticed twitches in my thighs faint at first but the more regular, but not as consistent as my calves which twitch over a thousand times a day. In that month between appointment I also noticed that when I eat i often have small piece of what I was eating stuck in my throat, I don’t choke but I can bring it up and swallowing just doesn’t clear it. This has been off and on but regular enough to be concerning, I also began and still feel twitches around my feet and on the soles which are extremely fast regularly.
My CT scan showed that my L3 and L4 were slightly bulged but in his opinion not enough to impinging the nerve. My bloods all normal except CK elevated over 300 and ferritin high. This lead to blood tests for heamotomochrosis and an ultra sound on the organs in my lower abdomen which were all fine. And ended up not have hemotomochosis. With an ankle injury and pain regularly ferritin and CK was linked by GP to injury in ankle.
At the second neuro appointment he did not touch me or look at my twitches. I had written a list of questions for him. Could t be Parkinson? No. Could be MS? No. His answers were short and no real reasons why provided and he seemed annoyed by all the questions I had. He then concluded I have definite BFS thanks to anxiety. He noted my concern about atrophy of my right calf muscle where fasicukations were the worse and he and a physio have recognised it is smaller (my dominant leg) but both put this down to ankle injury and that as a pain response the lower part of my right leg was not functioning properly to protect itself as that is what our body does in response to pain.
Fast forward to August (second neuro appointment was early June) I now have fasiculations in my face from time to time. I get buzzing sensations in my thighs like a phone is ringing inside my leg. Rapid thigh movement on out right thigh that are super fast and seems more pronounced after exercise. If I spread my fingers out then try to move them to make an alien hand (thumbs out , two fingers together space and other two finger together) they shake wildly side to side and this is on both hands. And just in th last 2 days my arms have started twitching more and can feel small ones in my fingers and palms even whilst typing this.
Now I have had my surgery my right calf muscle is 3 cm smaller than my left. I have sent a referral to an new neuro for a a second opinion. But waiting for appointment and will be asking for EMG. Oh I can still tense my right calf muscle but can’t maintain it as it soon fade after holding for a while and twitches can still be seen. If held half tensed the calf muscle looks like it is havin a fit.
Lastly, I have myclonic jerks not just when going to sleep but just during the day. When sitting at the computer or on the couch In legs and arms. And over the last 2 nights I have been woken up my arm jerks.
People tell me to not think of the twitches, but it is hard not to. I’d love to accept that anxiety is causing all this but I feel that something else is definitely up. I am a teacher and it is becoming harder to hold my arm to write on the board as my shoulder starts to burn and ache quickly which wasn’t a problem last year. My hands feel clumsy I have dropped things from time to time but i over analyse everything including my speaking so I now feel like I can’t speak properly and I stutter often. At this stage I’m into my fifth month since symptoms started and the progression from calves, to thighs to arms has a certain pattern to it.
As a dad, I just keep focusing on what I’ll miss out with my four girls if it is something bad. I know it may be nothing and I can only imagine the Emotional toll this has taken on you and your family in this forum if you have ALS. Any thoughts anyone could provide me would be helpful and I am hoping not to provoke negative responses but realistic and encouraging advice.
Thanks
Earlier this year both my right and left calf muscles were tight for no particular reason to the point where they were sore to touch and I was applying deep heat to relieve them. This pesrsisted for a few days and finally subsided. Then in late April I noticed one morning upon waking up that both calf muscle were twitching like crazy (I mean crazy). The twitching at first was only annoying and more noticeable when lying down. This prompted a visit to a neurologist who conducted a nerve conduction study NOT A EMG which I thought was the same thing up until the other day. This was 4 weeks from noticing twitches. The NCS was fine and he just looked at my calves, banged my knees to watch reaction but conducted no strength test. His conclusion BFS due to anxiety,
He order a CT of lower back and bloods. And to come back in about a month. About a week after I noticed twitches in my thighs faint at first but the more regular, but not as consistent as my calves which twitch over a thousand times a day. In that month between appointment I also noticed that when I eat i often have small piece of what I was eating stuck in my throat, I don’t choke but I can bring it up and swallowing just doesn’t clear it. This has been off and on but regular enough to be concerning, I also began and still feel twitches around my feet and on the soles which are extremely fast regularly.
My CT scan showed that my L3 and L4 were slightly bulged but in his opinion not enough to impinging the nerve. My bloods all normal except CK elevated over 300 and ferritin high. This lead to blood tests for heamotomochrosis and an ultra sound on the organs in my lower abdomen which were all fine. And ended up not have hemotomochosis. With an ankle injury and pain regularly ferritin and CK was linked by GP to injury in ankle.
At the second neuro appointment he did not touch me or look at my twitches. I had written a list of questions for him. Could t be Parkinson? No. Could be MS? No. His answers were short and no real reasons why provided and he seemed annoyed by all the questions I had. He then concluded I have definite BFS thanks to anxiety. He noted my concern about atrophy of my right calf muscle where fasicukations were the worse and he and a physio have recognised it is smaller (my dominant leg) but both put this down to ankle injury and that as a pain response the lower part of my right leg was not functioning properly to protect itself as that is what our body does in response to pain.
Fast forward to August (second neuro appointment was early June) I now have fasiculations in my face from time to time. I get buzzing sensations in my thighs like a phone is ringing inside my leg. Rapid thigh movement on out right thigh that are super fast and seems more pronounced after exercise. If I spread my fingers out then try to move them to make an alien hand (thumbs out , two fingers together space and other two finger together) they shake wildly side to side and this is on both hands. And just in th last 2 days my arms have started twitching more and can feel small ones in my fingers and palms even whilst typing this.
Now I have had my surgery my right calf muscle is 3 cm smaller than my left. I have sent a referral to an new neuro for a a second opinion. But waiting for appointment and will be asking for EMG. Oh I can still tense my right calf muscle but can’t maintain it as it soon fade after holding for a while and twitches can still be seen. If held half tensed the calf muscle looks like it is havin a fit.
Lastly, I have myclonic jerks not just when going to sleep but just during the day. When sitting at the computer or on the couch In legs and arms. And over the last 2 nights I have been woken up my arm jerks.
People tell me to not think of the twitches, but it is hard not to. I’d love to accept that anxiety is causing all this but I feel that something else is definitely up. I am a teacher and it is becoming harder to hold my arm to write on the board as my shoulder starts to burn and ache quickly which wasn’t a problem last year. My hands feel clumsy I have dropped things from time to time but i over analyse everything including my speaking so I now feel like I can’t speak properly and I stutter often. At this stage I’m into my fifth month since symptoms started and the progression from calves, to thighs to arms has a certain pattern to it.
As a dad, I just keep focusing on what I’ll miss out with my four girls if it is something bad. I know it may be nothing and I can only imagine the Emotional toll this has taken on you and your family in this forum if you have ALS. Any thoughts anyone could provide me would be helpful and I am hoping not to provoke negative responses but realistic and encouraging advice.
Thanks