Page 1 of 1

How Long You've Had BFS Matters. A lot.

PostPosted: April 18th, 2015, 9:56 am
by BFSBurger
With the recent events in this forum, and the recent announcement, I was just thinking...

Anyone can correct me if I am wrong here. But there are a LOT of people here who have had BFS for years, and are still worried about ALS.

Please keep something in mind. Many of you are researchers and googlers. You need to remember how many disorders START like something deadly and then (in the majority of people) fade. This, I believe, is because in the majority of people, the disease progression is handled by the body.

This is relevant. Its so relevant that it should almost be posted at the top of this site in bold letters.

It has been shown countless times that these types of disorders can start (and DO start!) in millions of people, but they go nowhere, or simply disappear after some time.

It has been shown that certain people who progress to full disease tend to have genetic mutations that the majority of people don't have, as well. This could be the deciding factor. I have no idea. But numerous neurological, autoimmune, and other types of diseases - IN MOST PEOPLE - come on strong and after 1 to 12 months, will fade away completely, or plateau. Never to progress to ANYTHING worse.

All you have to do is research all the autoimmune diseases out there and you will begin to see this all over the place. Sarcoidosis does this. And they undergo symptoms you and I would consider horrible.

Guillaine Barre syndrome does this. Weeks and months of quickly progressing neurological and neuromuscular disease - to the point of the whole body being paralyzed sometimes and then? .... you recover. Many times you recover completely.

THIS is the norm.

This is a big part of why, during my first 6 months, i wanted to know what this was. Because I knew that these disorders TEND to go away, but quite often its how you manage them during the acute phase that matters the most.. This is why, by my 6th month, I was full steam ahead on a lifestyle change regimen that reflected every known technique for preventing autoimmunity and neurological disease. Supplements, lifestyle changes, dietary changes, physical therapy, mental, emotional, and even medical interventions. I knew that even if I didn't know what this was - if it wasn't ALS - it very well could be just like all the others: Come on strong and either go away, or become a chronic condition. I didn't want a chronic condition, so I was going to help my body make it go away!

But I digress.

My point is this: The first 6 months with BFS can be scary. You don't know if you're going to progress to something bad. If you look at all the data and other syndromes out there, 90% chance you wont. But for those of you who are past 6-12-18 months, you really have no excuse to still be "borrowing trouble" for yourselves and assuming its ALS. You are no longer clinically qualified for that diagnosis. And you need to give a little respect to those who actually suffer from that disease and stop trying to be like them so hard. Seriously. That may sound twisted, but in some sense I sometimes wonder why people on here WANT it to be ALS so badly. Why do I say that? Because you can present them with any number of proofs under the sun that its not ALS and they will ignore you. You can talk their ears off. You can show them that their symptom set matches about 40 other mild disorders that never progress. But they dont care. They still focus on ALS.

Please stop borrowing trouble. Stop scaring the sh*t out of everyone here with your incessant reminders that you think it could still be ALS. And if someone on here reports that they've got something serious - stop going out of your way to notify everybody you know. You're not thinking ahead. You may think you're "proving your point" but all you're doing is instilling terror in people who are trying to get their minds straight. If you hear some bad news, keep it to yourself. Keep your own irrational fears sequestered to your own brain. Nobody elses.

-B-

Re: How Long You've Had BFS Matters. A lot.

PostPosted: April 18th, 2015, 11:27 am
by Scboy
I agree with this completely. When I saw Dr Bedlack at Duke back in July. He walked in he said "I reviewed your work up and it was very thourough. Why do you think you have ALS? ALS is rare." Then he went on to say that the vast majority of people similar to you have a genetic predisposition to nerve irritation or neuropathy that is not life threatening. It can affect quality of life in some cases but usually the individual can live a pretty normal life with lifestyle changes and they are alway developing new medications. He did say while it will probably level out and get better as I learn to manage it my problem will likely be with me forever to some degree. He said don't expect to wake up one day and expect this to be gone. So he was honest with me. His picture wasn't all rosey but he helped gain perspective and understand I can live a perfectly normal life with this. This helped me a lot coming from a Dr of his stature.

Re: How Long You've Had BFS Matters. A lot.

PostPosted: April 18th, 2015, 8:38 pm
by physerv24
This is a great post and it should absolutely be at the top of the list for every BFS sufferer. Being in the position I'm in I have had many discussions with those diagnosed with ALS. What I can tell you is that every single one of them, even if it took two years for a diagnosis, had PROGRESSIVE symptoms. Additionally, those who did not receive a diagnosis within a 1 year time period did not seek medical care at the onset of their symptoms.

Re: How Long You've Had BFS Matters. A lot.

PostPosted: April 19th, 2015, 7:15 pm
by MarioMangler
Great post. This is something that used to be said on this site all the time, but it doesn't seem to be mentioned all that much anymore. I do agree that it is pretty silly that people with twitching for longer than 2, 3, 4 years still think it could actually be something sinister. I mean, I've had BFS for nearly 8 years now and I am pretty sure I will have it for the rest of my life in some form or another. It doesn't really bother me. What does bother me is the cycle of fear that gets passed around on this site from people who have been dealing with this stuff forever and who really should know better.

You're doing great work on the board these days, Burger. Keep it up. :D

Re: How Long You've Had BFS Matters. A lot.

PostPosted: May 13th, 2015, 2:12 pm
by NeedAssurance
Twitching since 2006 and still very scared, especially when new symptoms seem to appear

Re: How Long You've Had BFS Matters. A lot.

PostPosted: May 14th, 2015, 5:56 am
by misterjuanperalta
10 months and progressing. No weakness that I can tell.