Alanahughes1994
New member
- Joined
- Dec 8, 2020
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- UK
- City
- UK
Firstly I want to say thank you for accepting me into this forum to gather advice and maybe some reassurance. I am 26 years old, female and my grandmother (maternal) had ALS when she was 68.
I saw a neurologist in January 2020 after receiving a diagnosis of Chiari Malformation however specialists don’t believe that it’s the cause of symptoms (I don’t either). I’ve had MRI of brain and spine which shows the CM and a loss of cervical lordosis, other then that all is normal.
For around 2 years now I have suffered from what feels like a heaviness/lifeless feeling in my arms and legs, thighs specifically when I say legs.
I have had twitching in my muscles (arms and legs) since August 2018.
I saw the neurologist in January who didn’t have any concerns, but agreed to send me for an EMG due to the muscle twitching and tingling in my legs. I had this done in Feb 2020 (one leg tested with the needle EMG, calf and thigh) results were normal.
However since around May 2020 my symptoms have got progressively worse, they appear to be getting worse daily.
My symptoms are;
A weak feeling in my legs 24/7, it feels like they are going to give out when I stand on them, my thighs also shake when standing on them and can shake even when sitting resting, they also tense up out of nowhere and shake. Twitching in my right calf and thigh and foot (my right calf appears to be a lot thinner then my left) and generally my legs have got thinner over the course of months (thighs included) but more so on my right side.
The lower part of my right leg and foot feels like it doesn’t belong to my body and feels tingling 24/7. I also suffer from tingling and pins and needles type feeling in my feet, they also feel terribly cold. My legs feel heavy and stiff when walking on them too. My calf muscles especially my right side are extremely soft, I describe them as
my right hand and wrist feels weak and stiff, but I can still use it to some extent but it feels off 24/7. I also have the occasional twitching in my hands also. I have pins and needles down the side of my right hand and into my pinky finger too, especially when sitting in certain positions.
a weakness feeling in my left shoulder - however can still raise my arm. I also have twitching in my left shoulder and left bicep 24/7, everyday.
what really concerns me is now my speech and a feeling in my tongue as though my tongue does not work properly when speaking and even when my tongue is at rest (not speaking) it doesn’t feel right in my mouth. When my tongue is at rest and I look at my tongue I can see flickers in my tongue. It feels like my tongue is shrivelling up in my mouth when resting. I also think the tone of my voice has changed, hoarse. It also feels difficult to speak and put sentences together because it’s too tiring for my tongue to do so. However no one around me has noticed.
my mind doesn’t feel right, I feel like I am trapped 24/7 and nothing around me feels real. I can’t concentrate on work, general life and have no excitement for anything because I feel so poorly.
I wake every morning and my body feels lifeless, like it doesn’t want to move and generally just very unwell. i want to sleep 24/7 because I am so fatigued and sleepy. I wake up unrefreshed every morning.
I contacted the neurologist in May 2020 and told him my concerns around my grandmother having MND and the symptoms I have experiencing, not to the extent I have explained above. It was just the issues with my leg and twitching at the time. He agreed to do another EMG, which I had done in June 2020, my right leg was tested (calf and thigh), left arm and hand, my back in 3 places (thoracic area) and under my chin. The neurophysiologist reported it as normal.
I saw the neurologist face to face in October, who done a clinical exam and reported there was no neurological deficit. Told me functional neurological disorder and suspects the twitching is benign fasiculations based on the EMG findings. I asked for a third EMG and he denied me one based on the findings of 2 EMG’s carried out this year already.
i then saw a physiotherapist private for a consultation who conducted a muscle test snd reported I have over average strength for a female. Despite me feeling weak and like my body is not functioning correctly.
I can still raise on my toes and heels.
I can still do simple tasks.
However I feel poorly every single day and like my health is getting worse and worse by the day. Now including my speech and tongue deteriorating.
my question to members on this post is, would you say these are symtpoms of MND? Have I described here MND and could this be what I am dealing with and should I seek a second opinion?
i appreciate anyone who takes the time to read this long post and replies. Thank you.
I saw a neurologist in January 2020 after receiving a diagnosis of Chiari Malformation however specialists don’t believe that it’s the cause of symptoms (I don’t either). I’ve had MRI of brain and spine which shows the CM and a loss of cervical lordosis, other then that all is normal.
For around 2 years now I have suffered from what feels like a heaviness/lifeless feeling in my arms and legs, thighs specifically when I say legs.
I have had twitching in my muscles (arms and legs) since August 2018.
I saw the neurologist in January who didn’t have any concerns, but agreed to send me for an EMG due to the muscle twitching and tingling in my legs. I had this done in Feb 2020 (one leg tested with the needle EMG, calf and thigh) results were normal.
However since around May 2020 my symptoms have got progressively worse, they appear to be getting worse daily.
My symptoms are;
A weak feeling in my legs 24/7, it feels like they are going to give out when I stand on them, my thighs also shake when standing on them and can shake even when sitting resting, they also tense up out of nowhere and shake. Twitching in my right calf and thigh and foot (my right calf appears to be a lot thinner then my left) and generally my legs have got thinner over the course of months (thighs included) but more so on my right side.
The lower part of my right leg and foot feels like it doesn’t belong to my body and feels tingling 24/7. I also suffer from tingling and pins and needles type feeling in my feet, they also feel terribly cold. My legs feel heavy and stiff when walking on them too. My calf muscles especially my right side are extremely soft, I describe them as
my right hand and wrist feels weak and stiff, but I can still use it to some extent but it feels off 24/7. I also have the occasional twitching in my hands also. I have pins and needles down the side of my right hand and into my pinky finger too, especially when sitting in certain positions.
a weakness feeling in my left shoulder - however can still raise my arm. I also have twitching in my left shoulder and left bicep 24/7, everyday.
what really concerns me is now my speech and a feeling in my tongue as though my tongue does not work properly when speaking and even when my tongue is at rest (not speaking) it doesn’t feel right in my mouth. When my tongue is at rest and I look at my tongue I can see flickers in my tongue. It feels like my tongue is shrivelling up in my mouth when resting. I also think the tone of my voice has changed, hoarse. It also feels difficult to speak and put sentences together because it’s too tiring for my tongue to do so. However no one around me has noticed.
my mind doesn’t feel right, I feel like I am trapped 24/7 and nothing around me feels real. I can’t concentrate on work, general life and have no excitement for anything because I feel so poorly.
I wake every morning and my body feels lifeless, like it doesn’t want to move and generally just very unwell. i want to sleep 24/7 because I am so fatigued and sleepy. I wake up unrefreshed every morning.
I contacted the neurologist in May 2020 and told him my concerns around my grandmother having MND and the symptoms I have experiencing, not to the extent I have explained above. It was just the issues with my leg and twitching at the time. He agreed to do another EMG, which I had done in June 2020, my right leg was tested (calf and thigh), left arm and hand, my back in 3 places (thoracic area) and under my chin. The neurophysiologist reported it as normal.
I saw the neurologist face to face in October, who done a clinical exam and reported there was no neurological deficit. Told me functional neurological disorder and suspects the twitching is benign fasiculations based on the EMG findings. I asked for a third EMG and he denied me one based on the findings of 2 EMG’s carried out this year already.
i then saw a physiotherapist private for a consultation who conducted a muscle test snd reported I have over average strength for a female. Despite me feeling weak and like my body is not functioning correctly.
I can still raise on my toes and heels.
I can still do simple tasks.
However I feel poorly every single day and like my health is getting worse and worse by the day. Now including my speech and tongue deteriorating.
my question to members on this post is, would you say these are symtpoms of MND? Have I described here MND and could this be what I am dealing with and should I seek a second opinion?
i appreciate anyone who takes the time to read this long post and replies. Thank you.