wellington
Active member
- Joined
- Feb 8, 2012
- Messages
- 40
- Reason
- Learn about ALS
- Country
- AUS
- State
- Queensland
- City
- Brisbane
Hello all you wonderful people.
I need some advice, and to that end - here's my story. I began developing weakness in one arm about 5 years ago. It got weak and never got better. My local doctor and neurologist suspected MS. MS is now out of the picture. Repeated MRIs have shown lesions, but not the right ones. I don't have MG apparently. I possibly have a movement disorder.
I am generally a head-in-the-sand optimist, so have shown not much interest until now. But now, my life is very much impacted on. I now have two weak arms, one very troubled leg. I can't lift my left arm above my shoulder, and have trouble blow drying my hair. I can't hold open a book to read for more than a minute. Apart from the earlier arm weakness, none of my other symptoms started until 18 months ago, and it has been downhill since.
I drop my cutlery and have trouble cutting food. My hands shake. My thumb wiggles. I now have lots of twitches, but only in affected spots and they have come along after the limbs went weak. I tried swimming recently - slowly. I felt pleased with my efforts, but my legs would barely work for the rest of the day, and I needed my cane.
At the beach over christmas, the waves knocked me over and I couldn't get up. It was very difficult - almost impossible - for me to walk on the sand.
I've asked my neuro whether I don't have a neurological condition - just a collection of things wrong with me, he says, no, I DO have a degenerative neurological condition, he just doesn't know which yet. I also have autonomic dysfunction - bowel, bladder, temperature irregularities - he finds these confounding.
I've had nerve conduction studies - no peripheral nerve issues evident. As for an EMG - I had one needle stuck in one thigh - the result was fine.
He says my reflexes are 'off, you are very shaky and wobbly and we'll just have to wait and see'.
Does anyone have any advice for me?
Thank you. I am so sorry to bother you. Good on you all for what you do.
Regards
Lilly
I need some advice, and to that end - here's my story. I began developing weakness in one arm about 5 years ago. It got weak and never got better. My local doctor and neurologist suspected MS. MS is now out of the picture. Repeated MRIs have shown lesions, but not the right ones. I don't have MG apparently. I possibly have a movement disorder.
I am generally a head-in-the-sand optimist, so have shown not much interest until now. But now, my life is very much impacted on. I now have two weak arms, one very troubled leg. I can't lift my left arm above my shoulder, and have trouble blow drying my hair. I can't hold open a book to read for more than a minute. Apart from the earlier arm weakness, none of my other symptoms started until 18 months ago, and it has been downhill since.
I drop my cutlery and have trouble cutting food. My hands shake. My thumb wiggles. I now have lots of twitches, but only in affected spots and they have come along after the limbs went weak. I tried swimming recently - slowly. I felt pleased with my efforts, but my legs would barely work for the rest of the day, and I needed my cane.
At the beach over christmas, the waves knocked me over and I couldn't get up. It was very difficult - almost impossible - for me to walk on the sand.
I've asked my neuro whether I don't have a neurological condition - just a collection of things wrong with me, he says, no, I DO have a degenerative neurological condition, he just doesn't know which yet. I also have autonomic dysfunction - bowel, bladder, temperature irregularities - he finds these confounding.
I've had nerve conduction studies - no peripheral nerve issues evident. As for an EMG - I had one needle stuck in one thigh - the result was fine.
He says my reflexes are 'off, you are very shaky and wobbly and we'll just have to wait and see'.
Does anyone have any advice for me?
Thank you. I am so sorry to bother you. Good on you all for what you do.
Regards
Lilly