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Guysif any of you remember me, you will see I have been going through this for many years. For me the story is now over, I do not have BFS, I have Syringomyelia. I am seeing the neurosurgeon on the 11th so will let anyone that cares know what the plan is.Stay Well everyone...Later

Can you do all the things you used to, such as lifting, walking, standing on your toes? If yes, then you do not have ALS. My dad died of it and I know how it works. you do not have it. Forget ALS and enjoy life or you will never get out of this circle.Stay Well..

HiI had an MRI of head and neck back in 2006 and this was not picked up so I can only assume it was not there. I did have facial twitching, basically I have had twitching everywhere. The only "cure" for this is an operation but that in itself has risk and scares me. It does explain the weakness...

GuysNot been on here in a while, so figured I would give an update.I went for an MRI recently and they found a 1cm syrinx in my neck. Basically it means I have Syringomyelia. This would explain a massive load of my symptoms.WIll be going to a neuro surgeon soon.....Stay Well....

I also have the shoulder pain, mine generally during the day stays in my elbow and down to my fingers...I think its a nerve issue...

Been here.....done this.....it's NOT ALS...move on. Trust me on this...MOVE ON...

Been a long time since I was on here, how is everyone? Hope everyone is doing ok...Just as an update, I have made no progress whatsoever and seem to be getting worse. Now I am so fatigued, my muscles hurt after very little excercise and I have very strong aches from head to toe 24x7. I still...

Now, I am not known for my tact but i am going to be extra blunt in order to try and save you from the hell that some people on here, (me included) have been through,Do you have any weakness? By this, is there something you used to be able to do that you cannot now?This is a simple question. The...

Yep, in my experience, it happens very quick. 27 months is a sign that this is something else...

hiI was told I had Gilbert's some time ago, although on my last blood test my levels were normal.I looked through the site for this syndrome and I had about 98% of the listed symptoms!!!!!He Ho...Stay Well...

I also have pain, but mine is all over. You are correct however, in that ALS DOES NOT present or progress this way. EVER!

Jeez, I could tell you about aching!!! I wont for fear of boring everyone here, but if aching was an olympic sport, I would have won every race going. With that and the fatigue, these are my biggest symptoms...

As soon as I saw you had pain, I was sure you did not have ALS. When I saw you had numbness, then this rules out ALS COMPLETELY. Absolutely and with no discussion. Stay well.....

COnstant...everywhere. I also have very bad muscle aches ALL over, kinda like a really bad flu. Then there is the feeling that my head is too heavy, the pressure feeling in back of head, very sore legs when walking etc etc etc. I am convinced its more ME\CFS than BFS...but neuro tomorrow!!!

Well I am in London all week, so drop me a note...

You know I have all of these....we are BFS twins lol

I have also had C FS thrown at me. I have been scoped at both ends and I was told I had "marked Gastritis". Not sure how that helps but the fatigue and pain are killing me .....

The muscle fatigue is the worst symptom for me at the minute. Even typing this I feel like my right arm is so heavy from the shoulders down. My legs hurt like hell after just a couple of minutes walking and even standing to do the washing up makes them hurt......I really can sympathise. Any...

With your BFS experience do you have or did you ever have

For me, I believe it was the trauma of watching my dad go through ALS.......it obviously had an effect on me!!!