BFS Diagnosis: 10 Years On

Highlights Only
O

octavia031

Well-known member
Hi,As some of you know I've got a weird dent and some muscle loss in my right hand. I had a clean EMG on 5th AugustDid not have a real als-specialist take a look at it so I pushed the hospital for more clear answers. Today the professor in ALS called me and said my EMG looked fine except fascics.I told him about medical papers that upset me and stuff and he said they had patients with BFS for 10 years and later ALS but that they are confident this is not related and that everyone has 1/1000 change to get ALS and that fascics are very common. So I still was suffering over the hand muscle loss and asked him if I could sent him some pictures of my hand to take a look at it, so I did. His answer:Dear Sir, I can see what you mean, but this not enough to speak from atrophy, the more this muscle was normal during the EMG/We will follow this up, but at this moment we don't have any argument to suspect ALS.(literally translated)I know I focus on words very hard - like not enough...but it looks like atrophy????Follow -up... do they think it's going to progress?At this moment....probably doctors talk?Any advice
 
Lostboy, I have one question for you... you had a normal EMG. They tested the muscle that you are talking about correct? Do you honsetly believe that if it was real atrophy from ALS that that EMG would miss it? I really doubt it. Also, the ALS specialist is telling you it's not ALS. No doctor is never going to tell you that you can't get ALS. Anyone of us can get it at anytime. Also, if you did get it what would you do? Crawl into a corner and give up? Look at Steven Hawkings. He has had it for 40 some years and yet he is a happy man. My point is how much more time are you going to waste on worrying? You have had all the tests, seen all the doctors. Please try to get over this. There are no guarantees in life.
 
I know I know but ALS is my worst nightmare and since I have non stop twitching in legs and hands + a huge dent, cramps, tremor , tongue twitching , twitching randomly every other second in a place etc...it's hard to believe they aren't wrong, believe me.My symptoms are much much much worse than most people on this board, some twitch like 50 times a day, my neuro says that's not even BFS just normal because everyone twitches. Steven Hawkings does not have pure ALS, my neuro said he probl. has PLS or a ALS-look a like that does not really has a name. They say they are variants that look like ALS, get the ALS label but are not really ALS, like Hawking. -- don't kill me, not my words. Anyway barbie you are right, there are no guarantees but I really HATE this SH*TI'm always in pain, muscle pain, hand pain, twitching pain, electric pain, tremor,cramps... I can't live a normal life with those symptoms and the huge dent isn't helping!But I'm glad the neuro says that this is not enough to speak from atrophy, and I also have it since december 2009 but slightly gotten bigger.
 
Lostboy, we all have your same fear. Everyone on this earth does. We just think about the fear more. See if you can get some meds that will reduce your ability to notice your twitches if you think that would help. It helped me.
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top