Investigation30
New member
- Joined
- Nov 24, 2024
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
Hello, I’m a 30 year old from the uk who is under investigation for neuromuscular disease. I am seeing a neurologist and waiting for an appointment for my EMG. The neurologist said he can’t rule out MND based on symptoms but is also considering nerve overexcitibility disorders. He doesn’t believe it’s MS but I will have an MRI to rule it out.
I have had bloods done already and waiting results although electrolytes/ thyroid is fine and my CK is slightly elevated it was repeated after a week and went from just below top of normal range to elevated.
It started out with a suspected tennis injury, thought it was just a trapped nerve and then the twitches started. It’s been around 8 weeks of twitches all over the body. My arm is getting progressively weaker, I can still use it but feels like I’ve had a long gym day all the time. I’m struggling with fine movements like buttons etc and have a slight tremor. The weakness is now felt in my legs as well but not as much. When walking my legs feel like a strange mix of boulders but also like jelly.
My arm feels so stiff while the weakness started more in the forearm it’s now stiffness in the bicep and the shoulder blade area. It constantly feels like I need to move it but the stiffness doesn’t disappear.
The worst is the anxiety, the symptoms above are the ones I can stay are objectively there but then there’s the symptoms I know are caused by feeling anxious. I’m also autistic so struggling with the lack of clarity, knowing what is wrong will help me process it.
There’s currently up to a 12 week wait for an EMG. If anyone is London based and knows of anywhere I can pay to get one sooner please let me know.
I have had bloods done already and waiting results although electrolytes/ thyroid is fine and my CK is slightly elevated it was repeated after a week and went from just below top of normal range to elevated.
It started out with a suspected tennis injury, thought it was just a trapped nerve and then the twitches started. It’s been around 8 weeks of twitches all over the body. My arm is getting progressively weaker, I can still use it but feels like I’ve had a long gym day all the time. I’m struggling with fine movements like buttons etc and have a slight tremor. The weakness is now felt in my legs as well but not as much. When walking my legs feel like a strange mix of boulders but also like jelly.
My arm feels so stiff while the weakness started more in the forearm it’s now stiffness in the bicep and the shoulder blade area. It constantly feels like I need to move it but the stiffness doesn’t disappear.
The worst is the anxiety, the symptoms above are the ones I can stay are objectively there but then there’s the symptoms I know are caused by feeling anxious. I’m also autistic so struggling with the lack of clarity, knowing what is wrong will help me process it.
There’s currently up to a 12 week wait for an EMG. If anyone is London based and knows of anywhere I can pay to get one sooner please let me know.