To Arron

Information about how to manage or reduce the severity of BFS symptoms

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To Arron

Postby Katie on March 24th, 2003, 8:00 pm

Hi Arron,

I'm addressing this to you because you've been so helpful on this board and especially with your detailed description of BFS vs. ALS.

I went to my internist today and I am somewhat freaked out right now. I've had twitches on & off for 6 months -- much more frequent and chronic for about 6 weeks now. She said she didn't want to scare me, but that sometimes it's hard to diagnose these kind of things and that the real disease doesn't present itself until much later. She mentioned ALS [of course], and that whenever anyone hears of "twitching" that it comes to mind -- but she did say that it usually is accompanied by weakness.

I've been having pain in my right foot -- the top of my foot -- a burning sensation [I have been tested for diabetes and do not have it]. It's getting worse and is quite painful. Tonight, the right 3 toes on that foot are numb & tingling. I'm really freaked out now about ALS, or some other neurological problem [although I can't think of anything worse than ALS]. For months now, I have avoided researching anything on ALS, because I know I will convince myself that I have this. I know that the twitching I have been having can't be related to it since it's moved around so much and I have had no continued weakness anywhere. And I don't even know if ALS is associated with a burning kind of pain in a limb.

I know you're not a doctor, but I was hoping to hear something of comfort. It's agony when your mind starts going before you know what is really going on and are thinking the worst. If I wasn't having this new foot problem, I wouldn't be thinking this. I am having an EMG done soon -- if I do have ALS, will the EMG definitely reveal it? The neuro said that it would show benign fasiculations -- and if that is the case, how do they determine what exactly the problem is then?

Thanks for any thoughts you might have on this.
Katie
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Postby kim on March 24th, 2003, 9:00 pm

Hi Katie!

I'm sure Aaron will be along shortly, but I wanted to give you my 2 cents. (I hope you don't mind).

I have had the same types of feelings in my feet over the past few months. I think it's pretty common among us. I really don't think you have to worry about als. Have the emg done as soon as possible to ease your mind. But from what you are explaining, it does not appear to have the same presentation as als.

I'm sure Aaron can explain it much better, but I know how you feel and I wanted to try to put your mind slightly at ease before he comes along.

Kim
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Postby Davidd on March 24th, 2003, 9:53 pm

Hi Katie--

Like Kim, I thought that I would also throw in my 1 cent (I'm not that smart!).

It is completely natural to be worried about ALS and anything else that is a mystery. When our bodies have strange sensations like numbness and twitching it puts our minds into overdrive and we begin to think of the worst. Fortunately for you, the symptoms you are describing sound nothing like those that accompany ALS. You have no weakness...which is excellent to hear.

The EMG that you will be having done is a very sensitive test and will pick abnormalities in the nerves. And yes, it may even pick up the twitching. If you continue to have the numbness in your toes, the doctor who conducts the EMG will absolutely check out the nerves running to those toes. I know, because I had a lot of the same symptoms you are describing.

In regard to benign fasciculations (still dont know how to spell that), unfortunately there is no way to determine what the "problem" is because the symtoms are benign. Many of us here continue to search for answers but the truth is that the twitches themselves are harmless...but just very annoying.

I do hope you feel better soon. Try to hang in there with all this stuff, because you WILL start to feel better as time goes on. You're in good company here because we've all been through this stuff and we're on the road to feeling 100%.

--David
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David & Kim

Postby Katie on March 24th, 2003, 9:54 pm

Thanks to the two of you -- I am feeling more relieved about everything tonight.
Katie
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Postby Arron on March 25th, 2003, 12:09 pm

Katie, relax girl. 6 months of twitching is a long time considering that twitches are a SECONDARY symptom of ALS. Twitches in ALS occur for one reason and one reason only, dying (or denervation of the) tissue. Besides, twitches from ALS are NOT even close to the type of twitches you get when you have BFS.

If you presented with twitches 6 months ago, which would mean that if it was ALS, it would have already had a strong-hold in your system by then, and you have no loss of muscle control or weakness as of yet, it is a pretty good chance it is nothing other than BFS. I say "pretty good" because it could be Fibromyalgia (also benign), BCFS (BFS with cramps), etc. It certainly doesn't sound like ALS at all.

Keep this in mind. Most doctors (GP's) will never even see a case of ALS. They only know what they are taught in college, and what they were taught was that twitches could be a sign of ALS, so they just don't know any better.

BFS is kind of new as far as terminology goes and you have to consider the facts. The world is getting smaller and smaller. Information is readily available at the click of a mouse, so we have MUCH more access to medical information than we did jus a few years ago. With that, you also have to consider this; we ALL twitch at one point or another in our lives, have they ever scared you before? No. 99% of the people on this and many other forums will tell you (me included) that the twitches NEVER scared them UNTIL they looked in a book or on the internet and found-out (although misleading information) that twitches can be a sign of ALS. THEN, and pretty much ONLY then, is when people freak-out. So in the past, no one knew enough to be scared.

So what I am getting at here is simple, BFS isn't new at all. It has been around for decades and probably since time began. It's only recently that people are becoming aware of it because of the ALS scare factor involved. If no one was misinformed that twitches could mean ALS, then none of us would even need to be on discussion boards like this. After all, it isn;t the twitches themselves that are scary, it's the fact that we were told (or read somewhere) that twitches could be ALS.

My own doctor buddies had never even heard of BFS before and I have about 8 of them that I shoot sporting clays with, golf, fish and so on with, BUT, some of them said they had a couple of patients that had these constant twitches with no weakness but neither of them knew what the heck it was, except that it was benign. These buddies of mine were smart enough and compassionate enough to keep calm (not blurt out ALS too hastily) and make sure there was no weakness associated with these twitches and whan there were no signs of any serious condition, they just told their patients to not worry about it, KNOWING it wasn't ALS, because with ALS, there is ALWAYS weakness, loss of muscle control and loss of coordination, after all, that's what the disease is all about in the first place, NOT twitching. The twitching is a SECONDARY symptom of ALS, NOT a primary symptom. Just like a sore throat is a secondary symptom of the flu, but that's not what causes the flu. A virus causes the flu... well... twitches certainly don't "cause" ALS and just like a sore throat. It is a "symptom" of an underlying problem, BUT without weakness or any of the serious MAIN symptoms of ALS, it is a benign underlying problem. As of yet, no one has figured-out what the underlying problem is that causes BFS, but in reality... who cares? It is benign! let the medical community research other more serious things that we could get rather than chasing something down that isn't going to do any serious harm.

Hang in there. It sounds like BFS and the best thing you can do is start reading all of the threads and topics on this web site. You'll be glad you did, trust me :-)
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Aaron

Postby Katie on March 26th, 2003, 9:24 pm

Aaron,

Thank you so much for your reply. I really do appreciate you taking the time to write all of that for me. It has helped me to read it, even though I have read all your other posts which say almost the same thing.

I think I started getting worried again when the Gen. Prac. told me that diseases usually take time to reveal themselves. She told me that she didn't want to scare me, but that it seemed I was trying to find answer for this [by seeing a few neurologists in the last few months] and she was basically telling me to hang back and just see what happens. I guess I took that and went home and started thinking that something, somewhere down the road was going to reveal itself -- like I would one day wake up and my foot would be dropped or something.

It also didn't help that one night this week I was very ill with a bronchial problem [exposure to chemicals in my apartment building] and I was up sick all night long. The next day, I was twitching at a full force and kept thinking my leg was weak -- but then I had a good night sleep after that and no twitching at all the next day. I guess sleep does matter.

The bottom line is, I know that BFS is benign, and I don't mind so much a twitch here & there, even if it's every day, but those "bad" days when the twitching is going nuts -- I just don't like it, and it freaks me out. I can't help sometimes going to the "bad" place in my head about it.

I'll get through this. I'm really glad that I found this site, and you have been so terrific.
Katie
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Postby Arron on March 27th, 2003, 2:21 am

Hang in there Katie, we ALL have our bad days too, BUT there are MORE good days, and knowing that this is benign, (although scary at times), is comfortimg as well. We just learn how to adjust and deal with our bad days. They go away in short time, so don't let it get to you, OK? :-)
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Postby osbormd on March 28th, 2003, 7:46 pm

Katie,

Although I'm not nearly as knowledgable as Arron and others on this site - I've had the same questions about EMG's and needing reassurance.

I posted a question about this on the Cleveland Clinic Neurology web site. A CCF Neurologist responded and said that "I would tell my patients who had twitching in the setting of a clean EMG and exam that they did not have ALS".

http://www.medhelp.org/forums/Neuro/mes ... 292-2.html

If you have had lots of twitching and no profound weakness or atrophy -- and if you get a clean EMG (which I'm sure you will) -- a clean EMG for people like us is a 99% assurance that we do not have ALS. Ive seen a lot of posts from people that have had this for years and say CLEAN EMG = NO ALS. It would be something for a major medical study if you did.

Once you have your EMG, you will be fine!!

Mike
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