Arm weakness and lose of use / muscle twitches. Very worried.

[ganderson]

Hello all,
I have resisted posting for a long time as, quite frankly, I am very scared and torn. I want to thank anyone in advance for any advice and for reading my post.

I am a female, 43 year old teacher. I have had an MRI and numerous blood tests test have all been clear. I am due to see a private neurologist in three weeks (the next appointment was in Oct '23 on the NHS!) My doctor advised if possible and within means that I should make a private appointment.

Approx 2 years noticed spasms in my left hand (particuarly my thumb - I could watch it 'pull' inwards.) As it wasn't my dominate hand, it didn't really interfere too much with day to day life and it was lockdown, I put up with it.

Gradually I noticed that my fingers would lock and spasm - particularly if I was using them to write or use cutlery.
I also began to notice that my left arm was significantly weaker and that I was beginning to have issues with lifting it.

I visited my doctor at this point and they ran blood tests, they came back clear. A physio thought that I had tendinitus in my left shoulder and gave me a series of exercises to do.

I now have fairly limited use of my left arm and have fascilations in both arms. The weakness I feel in my left arm is now in my right arm. I have to support my hand to do my makeup (it shakes too much when lifted) Washing / brushing my hair is difficult as I just don't have the power to lift my arms. Getting dressed is becoming more problematic. Writing on the board (I'm a teacher) is getting difficult as I can't lift my arms well.

I have read lots of threads regarding early symptoms and lots of websites giving information regarding ALS. I am aware that they say it rarely causes pain but I do have tender muscles in my biceps and forearms (on occasion) My bicep in my left arm will also spasm, which is unpleasant. My left arm will also lock/seize up if used sometimes which has to be manipulated to unlock.

I know that the neurologist will most probably sent me for further tests but I am so worried that it has been such a long time since I experienced the first symptoms. The weakness in my right arm seems to have come on very quickly.

Any advice is most welcome. Thank you for your time.

 

[Nikki J]

I am sorry you are going through this. 2 years is a long time for symptoms so whatever this is seems slow progressing

all I can advise is to prepare well for the appointment. A timeline and specific examples of what you can’t do as you gave here are helpful. Present your symptoms and sk what is wrong not just is this MND. Once you are prepared try to live your best life every day

let us know what happens. Good luck

 

[ganderson]

Thank you ever so much for your response. I will update when I have had my appointment.

Thank you again, much appreciated.