neySueSid567
Well-known member
Hello fellow BFSers,
I finally had an appointment with my doctor....remember me, I'm the one who is a total chicken and have been paralized by the BFS symtoms.
A little history: I've been twitching for 15 months, and I mean I have had about every symptom anyone has mentioned on this website, 24/7 twtiches in the arches of my feet, a ton in the calves, some on the arms and lots of hits and misses in about every muscle of my body. I have had the feeling of a butterly on the skin (fasiculation), hard twitches that are very visable, buzzing feelings...the list goes on as we all know it.
I saw a local doctor that who wasn't concerned and who put me on klonopin, which I think has helped some, but it was obvious she didn't know a thing about the causes of the twitching and I didn't push the situation.
I finally went to my old back and neck doc who I've had for 15 years ( I have degenerative disc disease and have had a history of neck and back pain, disc bone spirs etc). We had moved and were in another state for the past 2 years but have moved back and are within driving distance now. My doctor is a Physiatrist, which is a specialist in spine, rehab, and sports medicine. He has a sterling reputation and even is a doc for our local NFL team...he really is a doctor.
So, I went in today with all my previous MRI's from 6 or more years ago and told him EVERYTHING. I mean every detail, what I was thinking, about all of my symtpms etc. He listened intently and did a very detailed neuro exam, tested every neuro reflex I could possibly have, touched, looked and really checked me out. His first response was that " a lot of people have fasiculations, and often often after exercise. You probably have Benigh Fasciculation Syndrome". He knew what the heck BFS was! He also said that I DON'T have ALS, not to even worry about that. He wasn't alarmed and said that many people have twitches and we never know why they do, just is that they have BFS. He said that BFS is a conddtion that does exist, period.
Given my disc problems and history he wanted me to have a neck xray in his office (it's a big practice of about 8 doctors with a large radiaology dept.) I have 4 bone spirs growing, I knew I had 2 small ones about 8 years ago. He can't tell if they are growing towards the spinal cord itself. He wants me to get an MRI. He said we'll rule that out first because if there is any pressure in the least from the bone spirs ( on cervical discs 5-7) that it can irratate the lining of the cord (the dura) and can cause all kinds of symptoms, even in the legs and feet.
So to put it in a nutshell, he was NOT worried about ALS or any severe problem like that (I have no real weakness, but do have symtoms from my disc problems), no EMG is even needed and wants to see what's happening with my neck and we'll take it from there.
I was a wreck when I went in, really, but was calm as soon as I saw him. He said the twitching in the eyes, etc, is so often stress and not to worry about it.
So the good news is that my exam checked out well and we are the process of ruling out if it's caused by the discs. Oh, he said that thyroid problems can definitely cause fasciculations.
I have had myself dead so many times it isn't funny. I worried about leaving my lovely boys, not being alive for our oldest sons wedding that's happpening this summer. You know the story. I am back at school full time to finish my education, so I guess that's a good sign that I feel like I have a future lol.
I'll keep you all posted and for those with disc and back problems this may be especially interesting information.
Worry is a killer of the spirit, I know that first hand. Thanks for all the support from all of you. I will continue to try and be of help to all of you.
Warmly,
Sue
I finally had an appointment with my doctor....remember me, I'm the one who is a total chicken and have been paralized by the BFS symtoms.
A little history: I've been twitching for 15 months, and I mean I have had about every symptom anyone has mentioned on this website, 24/7 twtiches in the arches of my feet, a ton in the calves, some on the arms and lots of hits and misses in about every muscle of my body. I have had the feeling of a butterly on the skin (fasiculation), hard twitches that are very visable, buzzing feelings...the list goes on as we all know it.
I saw a local doctor that who wasn't concerned and who put me on klonopin, which I think has helped some, but it was obvious she didn't know a thing about the causes of the twitching and I didn't push the situation.
I finally went to my old back and neck doc who I've had for 15 years ( I have degenerative disc disease and have had a history of neck and back pain, disc bone spirs etc). We had moved and were in another state for the past 2 years but have moved back and are within driving distance now. My doctor is a Physiatrist, which is a specialist in spine, rehab, and sports medicine. He has a sterling reputation and even is a doc for our local NFL team...he really is a doctor.
So, I went in today with all my previous MRI's from 6 or more years ago and told him EVERYTHING. I mean every detail, what I was thinking, about all of my symtpms etc. He listened intently and did a very detailed neuro exam, tested every neuro reflex I could possibly have, touched, looked and really checked me out. His first response was that " a lot of people have fasiculations, and often often after exercise. You probably have Benigh Fasciculation Syndrome". He knew what the heck BFS was! He also said that I DON'T have ALS, not to even worry about that. He wasn't alarmed and said that many people have twitches and we never know why they do, just is that they have BFS. He said that BFS is a conddtion that does exist, period.
Given my disc problems and history he wanted me to have a neck xray in his office (it's a big practice of about 8 doctors with a large radiaology dept.) I have 4 bone spirs growing, I knew I had 2 small ones about 8 years ago. He can't tell if they are growing towards the spinal cord itself. He wants me to get an MRI. He said we'll rule that out first because if there is any pressure in the least from the bone spirs ( on cervical discs 5-7) that it can irratate the lining of the cord (the dura) and can cause all kinds of symptoms, even in the legs and feet.
So to put it in a nutshell, he was NOT worried about ALS or any severe problem like that (I have no real weakness, but do have symtoms from my disc problems), no EMG is even needed and wants to see what's happening with my neck and we'll take it from there.
I was a wreck when I went in, really, but was calm as soon as I saw him. He said the twitching in the eyes, etc, is so often stress and not to worry about it.
So the good news is that my exam checked out well and we are the process of ruling out if it's caused by the discs. Oh, he said that thyroid problems can definitely cause fasciculations.
I have had myself dead so many times it isn't funny. I worried about leaving my lovely boys, not being alive for our oldest sons wedding that's happpening this summer. You know the story. I am back at school full time to finish my education, so I guess that's a good sign that I feel like I have a future lol.
I'll keep you all posted and for those with disc and back problems this may be especially interesting information.
Worry is a killer of the spirit, I know that first hand. Thanks for all the support from all of you. I will continue to try and be of help to all of you.
Warmly,
Sue
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