ALS Support Community

Hi WObbyheart,

Thank you for message. I really appreciate it. May I ask what are your symptoms and how long have been having them ? It’s really frustrating indeed. have you received a diagnosis ? I will for sure seek a third opinion.
Thanks a lot for your words and understanding

Celine.

Hi Celine, my main symptoms are problems with movement (odd arm movements and hips 10 months ago), breathlessness that started 10 months ago and getting worse, muscle fatigatabity and extreme (super overwhelming like whole body is lead) fatigue, loss of dexterity and one particular movement in left hand, potential atrophy in left hand, positive Hoffman and hyper reflexes

Also drastic weight loss without trying and thinned muscles all over. I managed to put a few kilos back now in fat but not in muscle. I can’t exercise - any antigravity movement requires an unproportional effort

my blood work and mri normal. I had emg but only been twitching for 1,5 months so not sure whether it was early or it is bulbar /respiratory . I forgot to mention horrendous globus and I think it’s more difficult to talk since November. I also feel like my left side of the body is a bit numb. Not truly numb but just oddly altered feeling. Plus burning and tingling in my back. Sigh

My emg was normal so I fear UMN dominant MND with hyper reflexes and bilateral Hoffman signs.

Sorry to see we are in the same boat. Do you have fatigue?

Hi again, yes I just read all your posts and conversations. We are definitely indeed experiencing similar situations. and its really concerning.
Thanks for understanding and for getting in touch. I wish you health could improve and you be able to take care and enjoy your baby.

Two cleam EMGS in a period of 3 months.I really want to believe the Neromuscular and previous Neuro statements ( NO ALS/ MND) but how come symptoms just keep getting worse I just made a request to be scheduled for a third opinion with a different Neuromusecular specialist.

Yes Wobblyheart, I feel fatigue all the time, i can’t work out anymore, I can’t drive. My right leg arm and hand, keep getting weaker, shaky, clumsy and tired with every movement I make. It’s really debilitating, my left hand ( dominant) started to feeling the same way. I’m sacred.

How are you doing Wobblyheart?

Hi Celine, what you describe is pretty much identical with me. I am so sorry you are experiencing the same. Good that you made another appointment.