Sammbie
Member
- Joined
- Feb 15, 2017
- Messages
- 16
- Reason
- Learn about ALS
- Country
- UK
- State
- Shropshire
- City
- Telford
Hi everyone, another newbie reaching out for answers no one can really give. I'm Sam, a 41 year old single mom of 3 kids.
My journey started just 11 months ago and I'm no where closer to coming to an answer or diagnosis. It started instantly, with incredible pain in my left shoulder and arm. For months I had to convince my GP the pain was severe at it is.
After 3 months I started physio and this is when I noticed the atrophy. I'd lost obvious muscle (I was in good form before all this) on my shoulder, pectoral, tricep, bicep all lost tone and the thumb muscles have completely gone. Physio suggested it was due to lack of use, so I went back to the GP.
The GP finally referred me to a neurologist who initial findings were positive babinski reflex on left foot, loss of strength in left arm and positive Hoffman on the left hand. I was sent for an MRI which showed foraminal stenosis and a trapped nerve root. I was happy with the results and was and still am waiting for my follow up appointment. This was in December.
I was taking Gabapentin for the pain and that worked well until I started blacking out. I weaned myself off and at the moment only take naproxen when the pain is really bad.
Since December, I have noticed a slight limp developing on my left side when I walked for a period of time. These symptoms stayed pretty much the same up until a few weeks ago. Over the last 2 weeks I noticed how heavy my limbs had become (left side slighty more than right) and simple tasks like cooking a roast dinner or folding laundry seemed to be increasingly more difficult.
I went back to the GP and he noted obvious weakness in my left leg and and thumb atrophy on the right hand and a positive Hoffman reflex. He's requested my follow up with the neurologist to be sped up, so now I'm waiting.
Today I'm sitting a my desk feeling like gravity is pushing my down, the heaviness of my head, arms and Legs are something else. The only relief I get is to lie down, which I can't do.
I know it could be a number of conditions but I'm here because this is my worst fear, life's thrown some real curve balls for me and my little family and this would be another. I'm a realist and any of the conditions I may have are not pleasant but this one scares me the most. But I'm also a realist, if I an dealing with anything as harsh as ALS how long should I wait to see the neurologist? GP thinks I may be waiting a while yet, I don't know how much longer I can wait. Holding my phone, using a mouse, walking upstairs and even holding my head up feel like hard work..
Any suggestions as to my next steps...
Thank you for taking the time to read.
My journey started just 11 months ago and I'm no where closer to coming to an answer or diagnosis. It started instantly, with incredible pain in my left shoulder and arm. For months I had to convince my GP the pain was severe at it is.
After 3 months I started physio and this is when I noticed the atrophy. I'd lost obvious muscle (I was in good form before all this) on my shoulder, pectoral, tricep, bicep all lost tone and the thumb muscles have completely gone. Physio suggested it was due to lack of use, so I went back to the GP.
The GP finally referred me to a neurologist who initial findings were positive babinski reflex on left foot, loss of strength in left arm and positive Hoffman on the left hand. I was sent for an MRI which showed foraminal stenosis and a trapped nerve root. I was happy with the results and was and still am waiting for my follow up appointment. This was in December.
I was taking Gabapentin for the pain and that worked well until I started blacking out. I weaned myself off and at the moment only take naproxen when the pain is really bad.
Since December, I have noticed a slight limp developing on my left side when I walked for a period of time. These symptoms stayed pretty much the same up until a few weeks ago. Over the last 2 weeks I noticed how heavy my limbs had become (left side slighty more than right) and simple tasks like cooking a roast dinner or folding laundry seemed to be increasingly more difficult.
I went back to the GP and he noted obvious weakness in my left leg and and thumb atrophy on the right hand and a positive Hoffman reflex. He's requested my follow up with the neurologist to be sped up, so now I'm waiting.
Today I'm sitting a my desk feeling like gravity is pushing my down, the heaviness of my head, arms and Legs are something else. The only relief I get is to lie down, which I can't do.
I know it could be a number of conditions but I'm here because this is my worst fear, life's thrown some real curve balls for me and my little family and this would be another. I'm a realist and any of the conditions I may have are not pleasant but this one scares me the most. But I'm also a realist, if I an dealing with anything as harsh as ALS how long should I wait to see the neurologist? GP thinks I may be waiting a while yet, I don't know how much longer I can wait. Holding my phone, using a mouse, walking upstairs and even holding my head up feel like hard work..
Any suggestions as to my next steps...
Thank you for taking the time to read.