notme
Extremely helpful member
- Joined
- Apr 3, 2011
- Messages
- 2,605
- Reason
- PALS
- Diagnosis
- 08/2011
- Country
- US
- State
- Fl
- City
- Orlando
Hello
Saw the ALS clinic neuro specialist today. She has promised me that she will figure out what is wrong with me.
First--she put me on baclofen. She saw the spasticity for herself, which was much easier than me trying to describe the weird stuff going on with my legs and hands.
The majority of the signs she saw were UMN issues--hyperfeflexia, clonus, spasms, etc.
But--she also noted that my upper limbs seem to have LMN signs--though she's unsure if it's from trapped nerves--leaving the spams in my hands and all perhaps a separate issue.
I asked about the breathing issues--and she seems to think they are muscle related--not so much from my asthma as I had been thinking.
She's ordered a ton of blood work -- and a brain MRI, and wants to do EMG of various areas.
Her differential at this time seems to be ALS, PLS or MS---because there are things that don't seem to fit ALS--such as the heat intolerance and the fact that my leg issues have been going on for so long.
I thought the symptoms of MS were totally different from PLS/ALS--but apparently some can overlap.
I'm cautiously optimistic that it's either MS, slowly progressing ALS or PLS. If they find that the atrophy in my left arm is indeed simply caused by a trapped nerve--that seems like it would decrease the chances of it being ALS--since the majority of the rest are definite UMN signs, right?
I was advised to continue to use my walker, to do all I can to prevent more falling, take the baclafon, and to be careful overdoing it with exercise (I explained that I have zero exercise tolerance)
She adamantly insisted that I not do any surgery to fix my neck or arm--and cautioned me that I won't be getting a quick diagnosis.
oh--and she wants my breathing checked--so have to have a sleep study done, too.
So--in a few months, I might know more than I know today. At least in the meantime, i will at least be able to stop the spasms.
Saw the ALS clinic neuro specialist today. She has promised me that she will figure out what is wrong with me.
First--she put me on baclofen. She saw the spasticity for herself, which was much easier than me trying to describe the weird stuff going on with my legs and hands.
The majority of the signs she saw were UMN issues--hyperfeflexia, clonus, spasms, etc.
But--she also noted that my upper limbs seem to have LMN signs--though she's unsure if it's from trapped nerves--leaving the spams in my hands and all perhaps a separate issue.
I asked about the breathing issues--and she seems to think they are muscle related--not so much from my asthma as I had been thinking.
She's ordered a ton of blood work -- and a brain MRI, and wants to do EMG of various areas.
Her differential at this time seems to be ALS, PLS or MS---because there are things that don't seem to fit ALS--such as the heat intolerance and the fact that my leg issues have been going on for so long.
I thought the symptoms of MS were totally different from PLS/ALS--but apparently some can overlap.
I'm cautiously optimistic that it's either MS, slowly progressing ALS or PLS. If they find that the atrophy in my left arm is indeed simply caused by a trapped nerve--that seems like it would decrease the chances of it being ALS--since the majority of the rest are definite UMN signs, right?
I was advised to continue to use my walker, to do all I can to prevent more falling, take the baclafon, and to be careful overdoing it with exercise (I explained that I have zero exercise tolerance)
She adamantly insisted that I not do any surgery to fix my neck or arm--and cautioned me that I won't be getting a quick diagnosis.
oh--and she wants my breathing checked--so have to have a sleep study done, too.
So--in a few months, I might know more than I know today. At least in the meantime, i will at least be able to stop the spasms.
