Everyone 
Today I had a follow up visit at the neuro. I was frightened when I got there but calmed down once I got settled in my waiting chair My neuro(studied with Dr. Appel at the ALS clinic in Houston) came in shook my hand and complimented me on my calm demeanor...WOW. He tested my reflexes and they are down a number. I told him I was feeling better and he said he could tell. You see he had planned to see me every 2 months for a year since I was freaking out, but after this wonderful visit he said we could wait for 6 months. This is his normal procedure for BFS patients due to anxiety.
I asked him why sometimes ALS is sometimes hard to diagnose. He said it really wasn't. It's just that a regular neurologist only sees 2 cases of ALS a year and not seeing it on a regular basis can make the diagnosis tricky. He said neuro's that have training at an ALS clinic can usually can tell even before an emg. I'm not saying a regular neuro isn't good enough, I'm just saying if any of you are still doubting your BFS diagosis please see a movement disorder specialist. They might help you get over the hump of the ALS fears since they see ALS alot.
I'm as high as a kite no med's...just high on life and my appointment. It's so great to find a wonderful doctor. I hope you all are as fortunate with yours.
*I asked him if BFS is a precursor to ALS...NO NO NO!* This one always scares me.
Have a great day
Renee
Today I had a follow up visit at the neuro. I was frightened when I got there but calmed down once I got settled in my waiting chair
My neuro(studied with Dr. Appel at the ALS clinic in Houston) came in shook my hand and complimented me on my calm demeanor...WOW. He tested my reflexes and they are down a number. I told him I was feeling better and he said he could tell. You see he had planned to see me every 2 months for a year since I was freaking out, but after this wonderful visit he said we could wait for 6 months. This is his normal procedure for BFS patients due to anxiety.I asked him why sometimes ALS is sometimes hard to diagnose. He said it really wasn't. It's just that a regular neurologist only sees 2 cases of ALS a year and not seeing it on a regular basis can make the diagnosis tricky. He said neuro's that have training at an ALS clinic can usually can tell even before an emg. I'm not saying a regular neuro isn't good enough, I'm just saying if any of you are still doubting your BFS diagosis please see a movement disorder specialist. They might help you get over the hump of the ALS fears since they see ALS alot.
I'm as high as a kite no med's...just high on life and my appointment. It's so great to find a wonderful doctor. I hope you all are as fortunate with yours.
*I asked him if BFS is a precursor to ALS...NO NO NO!* This one always scares me.
Have a great day
Renee
)