BFS is nothing like ALS

General Topics

Moderators: JohnV, Arron, garym

BFS is nothing like ALS

Postby Ava on August 8th, 2013, 11:52 am

It has been about 10 years since I googled muscle twitches and frightened myself so much that I ended up in the UCSF ALS center for testing. I was given assurance at that time that this was not ALS and was in fact BFS. I am still very healthy and strong and I have body wide twitches all day long every day. I do not usually notice them unless I stop to think about them. I do have fingers that move on their own daily and eye twitches and large twitches that draw my attention from time to time. Physically, I feel fantastic and enjoy exercising, pilates, walking and strength training too. I'm about to celebrate my 50th birthday and I am very, very grateful for my good health.

To everyone who is concerned that their muscle twitching must be more that BFS: Please don't worry, you are healthy. If it were something serious like ALS you would know as the weakness is apparent in ALS. The reason I can say this is that my 80 year old dad recently was diagnosed with ALS (sporadic, not hereditary) and I am watching him decline from this disease as we cherish each day together. He has a slow progressing ALS according to doctors at UCSF (same doctor that diagnosed me with BFS many years ago - she has BFS too.) Even with what is called slow progress, he is so different this summer from last summer - he now uses a cane or walker and will one day use a wheel chair. When doctors say "It is not ALS" after a neuro exam, please believe them. I wish I had because I wasted about 3 years worrying about myself until I fully believed I was okay. There is a reason that the doc's can spot ALS patient when they walked through the door - because of all of the googling I did out of fear for myself on the subject years ago, I was the one to suspect ALS in my dad when he started to have subtle voice changes, weakness in his hands and shoulders. I brought him to the same neuros (I saw two) that I went to for BFS and he was diagnosed shortly after they ran testing. ALS is nothing like BFS.

As a footnote, my dad's fasciculations are very fine not like the fine and big pronounced ones that I get and that are exacerbated after exercise. I will say it one more time: BFS is really nothing at all like ALS and for those with ALS, there is no mistaking it once it takes hold. To all my fellow BFS'rs - enjoy your good health!

Ava
Ava
Hero
Hero
 
Posts: 265
Joined: July 6th, 2004, 11:34 pm
Location: San Francisco

Re: BFS is nothing like ALS

Postby LApea on August 8th, 2013, 12:51 pm

First off, I'm so very sorry to hear about you Father.

Secondly, thank you so much for taking time to write your post, so many years after your journey started. You're right that BFS is not like ALS, it's the accepting it that is the hard part.

I know I still struggle at times one year in, but each day gets better and posts like yours make it easier, so thank you again.
You drown not by falling into a river, but by staying submerged in it. -Paulo Coelho
User avatar
LApea
Selfless giver of time
Selfless giver of time
 
Posts: 247
Joined: August 1st, 2012, 10:53 am
Location: California

Re: BFS is nothing like ALS

Postby johnnythejet on August 8th, 2013, 1:20 pm

Ava-
That is horrible news about your dad, as I can't imagine how hard this must be on you and your family.

At the same time, thank you for stopping in and sharing your status with the rest of us. It means a lot to newbies who see us get past the annoying, yet harmless, symptoms and live life 100% without any negative impacts. I'm sure many will read and learn from your story. Thanks again.
User avatar
johnnythejet
Saint
Saint
 
Posts: 1602
Joined: September 15th, 2005, 2:36 pm
Location: Kansas

Re: BFS is nothing like ALS

Sponsor

Sponsor
 


Return to General Topics

Who is online

Users browsing this forum: Bing [Bot], Google [Bot] and 7 guests