rachie
New member
- Joined
- Jul 15, 2024
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- City
- london
Hi Everyone,
Thank you for reading this - I am not looking for reassurance as I'm not the 'worried well' and I know you aren't medics but I am in need of support and refection if possible.
One month ago I felt fantastic - energy and all seemed well (although looking back I think the muscle atrophy on hand and foot were there from pictures Ive seen) I felt strong and happy and was swimming, walking etc . Since then I have seen an emergency Neurologist because of the following:
* right leg felt tight in calf, but weak too, and had twitches all over that calf and the other one fiercely. I noticed muscle atrophy in my foot and ankle and made an appointment
* neck muscles, arms and back muscles feel weak too and the day after I saw him I noticed there is atrophy in my right hand, right arm and basically all my muscles have changed in strength. I have notified him.
* my sensations in both ankles aren't there when he tested, but last Wednesday the reflexes were in tact. I cant say if they are still in tact because within this past 5 days I have deteriorated so alarmingly fast. My right foot also showed a lack of strength when tested.
* my left foot arch is now so painful I cant walk on it properly ( but no pain if just lying here) , the right legs and left leg feel so weak I took a shower this morning ( been in bed most of past 3 days) and the legs were vibrating and shaking with odd empty feeling, and vibrations. My hands also have the same odd feelings as I'm feeling on my foot but not pain as it is in the foot, but the bones are uncomfortable now as I type like they are rubbing together Cant quite describe it.
* I have had an internal tremor and vibrations all through the body this past 4 weeks since the start of this episode and last night it progressed to being able to be felt by touching the skin and I felt as if I was attached to a current for over 15 mins- and the twitching is still fierce in calves and feet and also pops elsewhere as is not uncommon.
* my buttock muscles are weak and i cannot walk more than a few paces without the body feeling like it is going to collapse and I barely make it to the bed. My gait if weird too, feels like Im not attached to my legs in some way but no numbness.
* bloods so far show high Immunoglobulin m - but that's all. He booked a nerve study test for next tues because he is concerned about all this.
I am not saying this is ALS, I don't want it to be but I am so incredibly unwell so rapidly and have all over muscle weakness, muscle atrophy and twitching so I wanted to reach out to see if the time line is possible - the speed of decline? I wondered if the muscles had been going for a while but I didn't notice until the weakness set in? I don't know that id have noticed any atrophy in my hand or foot without feeling the weakness and then - ahh. Its both sides but the right feels weaker . I feel so overall unwell, in every fibre of my being it feels like something is attacking my nerves all over at once - so weird .
Other random symptoms are there but I wont bore you with this . Much love to all .
Rachie x
Thank you for reading this - I am not looking for reassurance as I'm not the 'worried well' and I know you aren't medics but I am in need of support and refection if possible.
One month ago I felt fantastic - energy and all seemed well (although looking back I think the muscle atrophy on hand and foot were there from pictures Ive seen) I felt strong and happy and was swimming, walking etc . Since then I have seen an emergency Neurologist because of the following:
* right leg felt tight in calf, but weak too, and had twitches all over that calf and the other one fiercely. I noticed muscle atrophy in my foot and ankle and made an appointment
* neck muscles, arms and back muscles feel weak too and the day after I saw him I noticed there is atrophy in my right hand, right arm and basically all my muscles have changed in strength. I have notified him.
* my sensations in both ankles aren't there when he tested, but last Wednesday the reflexes were in tact. I cant say if they are still in tact because within this past 5 days I have deteriorated so alarmingly fast. My right foot also showed a lack of strength when tested.
* my left foot arch is now so painful I cant walk on it properly ( but no pain if just lying here) , the right legs and left leg feel so weak I took a shower this morning ( been in bed most of past 3 days) and the legs were vibrating and shaking with odd empty feeling, and vibrations. My hands also have the same odd feelings as I'm feeling on my foot but not pain as it is in the foot, but the bones are uncomfortable now as I type like they are rubbing together Cant quite describe it.
* I have had an internal tremor and vibrations all through the body this past 4 weeks since the start of this episode and last night it progressed to being able to be felt by touching the skin and I felt as if I was attached to a current for over 15 mins- and the twitching is still fierce in calves and feet and also pops elsewhere as is not uncommon.
* my buttock muscles are weak and i cannot walk more than a few paces without the body feeling like it is going to collapse and I barely make it to the bed. My gait if weird too, feels like Im not attached to my legs in some way but no numbness.
* bloods so far show high Immunoglobulin m - but that's all. He booked a nerve study test for next tues because he is concerned about all this.
I am not saying this is ALS, I don't want it to be but I am so incredibly unwell so rapidly and have all over muscle weakness, muscle atrophy and twitching so I wanted to reach out to see if the time line is possible - the speed of decline? I wondered if the muscles had been going for a while but I didn't notice until the weakness set in? I don't know that id have noticed any atrophy in my hand or foot without feeling the weakness and then - ahh. Its both sides but the right feels weaker . I feel so overall unwell, in every fibre of my being it feels like something is attacking my nerves all over at once - so weird .
Other random symptoms are there but I wont bore you with this . Much love to all .
Rachie x
