A newbie with a (hopefully) helpful story

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

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A newbie with a (hopefully) helpful story

Postby MarioMangler on September 19th, 2008, 2:43 am

Hi there,

My name is Mario. And I have BFS.

Well actually no, that's not quite true. I just THINK I have BFS. Nobody has actually come out and diagnosed me with it yet. But from reading the posts here, and from talking to my doctor and neurologist, I have a pretty good idea that the twitches and the tingles and the popping and the fatigue I feel are nothing to get concerned about. In fact, even though my twitching only started hardcore for me about a month ago, I would guess that I have really had this affliction for a long, long time. I bet most of us had it years before we even realized it.

Here are my symptoms. I'm not going to go into great detail about them, because I'm sure that every single person on this board has had the exact same symptoms. So here you go. Want more of the same? Here is what I have been dealing with:

Four months ago, I was sitting at work in a training class, and I noticed that my right nostril was fluttering a little bit. It wasn't anything major, just a little tingle. After a day, it started to spread a little bit. After a week it was now a tingle in my right nostril, my lower lip, and my left cheek. So I went to my doctor. I had been having a lot of headaches prior to this (I work on a computer and I have horrible posture) so I asked if maybe I had a trapped nerve and should see a neurologist. She set me up with a referral and I thought I was good to go.

Well guess what happened? Before I ever went to my neurologist, the tingling went away. Pop, on its own. So I put off ever going to him, and forgot all about it. I even went on vacation. I had zero symptoms for two full months. But the minute I came back from vacation, the minute I got back to work, that's when the fireworks began.

All of a sudden, my facial twitches came back with a vengeance. Now it wasn't just twitching, now it was also random numbness. And then I noticed strange weakness in my legs. It wasn't that the muscles themselves were weak, it was just like I was too heavy for my legs. They felt rubbery. That concerned me. My balance was a little bit off as well.

And that of course is when I went to the internet to google my symptoms.


Okay, up until this point I had been thinking "neck issues." But all of a sudden I was thrust into the same panic that all of you have been through. ALS. MS. Parkinson's. Holy crap! Well guess what? Now the twitching got REALLY bad. Now I started noticing twitches all over my body. In my arms. In my legs. In my butt. Down my back. Every muscle suddenly felt like it was going crazy. Now all my limbs felt weak. I could suddenly feel "weakness" everywhere. I couldn't eat. I was practically roleplaying my own funeral in my head. My IBS flared up like crazy. I lost 6 pounds in a week. I found myself taking meditation naps 10-15 times per day just to try to calm myself down.

Well one nervous breakdown later (I'm kind of laughing this off now, but obviously it was a serious concern at the time, just it was/is for every one of us), I finally got an appt with my neurologist. I told him all of my symptoms, and he just sort of smiled. In fact, he even brought up the subject of "ALS panic" before I did. He said that he teaches classes over at a local medical school, and without fail at least 2 or 3 students will come up to him every year and swear that they have Lou Gehrig's Disease. He said that in the medical community this is known as "Medical Student Syndrome." Apparently medical students tend to believe that have every condition they ever study in class, and it is a very common thing. So the first thing he told me was STOP GOOGLING SYMPTOMS on the internet. He said that it will do nothing but freak me out, so the first step in treatment is to stop doing that.

He also asked if I was testing myself for weakness. I said that yes, I was. Again, he told me to STOP DOING THAT. He said that no matter how many times I test myself, I will always find weakness. It's just what the brain does. You will always perceive yourself as being weaker than you actually are. If you want to see something, you will see it. So he said knock that off, all I am doing is freaking myself out.

He did a few simple little neurological tests on me (testing reflexes, having me hold my arms out, testing my eyes closed balance, etc) and right off the bat he said it's not ALS. He said that if I had ALS, he would have known it the minute I walked into the room. He basically implied that if I were already at the weakness/atrophy/muscle twitching stage of ALS, I wouldn't even be able to get up out of a chair. So he said to take my mind off of ALS. It's a very rare condition and it's not helping me.

I asked well what about MS? He asked if I had had an MRI. I said that yes, I had had a brain MRI for my headaches and it had come back negative. He said well there you go. No MS. I said, "Wait a minute, isn't it possible to have MS on the spine instead?" He shook his head and said no. He said that even if MS were on the spine, you would always have latent or secondary lesions show up on the brain as well. He said in this day and age, with the technology we have now, he couldn't even fathom how a person could have MS if they had a completely clean brain MRI. I know this contradicts several things that are written in other places on the internet, but again, that was word for word from a 20+ year experience neurologist last week, so I am inclined to believe him. I have been trying very hard not to diagnose myself on this one.

And then, of course, he finally told me about BFS. I had never heard of it before, but he said that it happens to a lot of people, and that it is usually caused by either illness or stress. He explained that it was completely benign, and it sounded exactly like what I was going through. He said it could explain pretty much every one of the symptoms I was going through. The only thing he said BFS probably wasn't responsible for was my headaches/balance issues. He said that was likely caused by my poor posture and weak neck. So to clear that up he sent me to physical therapy. For everything else, he just told me to relax and chill out and call him back in 6 weeks to let him know how I felt.

So anyway, there's my story. He never even brought up the idea of taking an EMG. Even though I was twitching from head to toe, even though I was physically shaking all over, he said right off the bat that there's no way it is ALS or MS. He said that's not the way they those diseases tend to present themselves. And, well, of course, that was what finally reassured me. I immediately calmed down. I then told him it would be very helpful if he could just tell me I was an idiot and this was all just a big waste of time. I said if he did that, then I could go home happy. And of course he said no, doctors can't do that. They can't call their patients idiots. Oh well, I tried. :D

So anyway, that's where I stand now. I am currently in the middle of physical therapy, and I am still trembling and shaking and twitching nearly from head to toe. The twitches on my face tend to stop every once in a while, but the ones in my legs are nearly always there. They never go away. But you know what? After a month I think I have already moved past the "I'm terrified!" phase, and I think I have also moved past the "Woe is me, this sucks!" phase. I think I've already moved into the acceptance phase. I'm just going to twitch. I'm just going to feel fatigued. I'm just going to be achy. That's all there is to it. In fact, my wife tells me I have probably twitched for 10-15 years, and I have never even noticed it. She says that ever since she has known me, I have always twitched and "kicked" and jerked as I am falling asleep at night. So I am guessing this stuff started long, long ago, and it wasn't until I started googling symptoms that I even started to notice it.

Also, every time I complain about my condition to my wife, she gently reminds me that the first letter in BFS stands for "benign." She says anytime I start to get down about it, or get depressed, I should just remember that. Because remember, we could have something a lot worse. I just tell myself that my ankle and calf twitches are just my legs telling me they are happy at night.

Oh yeah, and doing physical therapy while having BFS? Not a good idea. I had no idea what the phrase "exercise intolerance" meant until I tried this. Yow. My joints and muscles have been creaking and popping and straining and tensing and cramping all month. But guess what? No weakness! I never had any, either!

Anyway, thanks for reading my story. Hope this helps someone out there who might be feeling panicked about this. It helps to try to keep a good sense of humor about things. Remember, there are lots of people just like you, who have the same symptoms, and have been through the same panic attacks, and none of us have ALS. We all live to the same age we were going to live to normally. Besides, you just have to look at this logically. If a doctor really DID think you had a nasty life-threatening disease, don't you think he would do everything he could to cover his butt and get that tested? Don't you think he would do everything under the sun to avoid a future charge of malpractice and neglect? Doctors aren't stupid. If there is any chance this could come back and bite them in the butt, they will cover their bases. Trust me, I have worked with lawyers and personal injury and insurance companies for years. My dad was a personal injury lawyer. If there is even a 1% chance that you have ALS, a doctor will pursue that. They have to. That's what they do. Remember, a good neurologist sees 150 patients a month just like you.

I love this site. Whoever started it was a genius. Reading all the stories here has saved me from a lot of mental anguish. I just hope that reading my story can help someone else from freaking out as well. Trust me, I know we all go through it.

And stop testing yourself for weakness. That's not weakness! You're only freaking yourself out!

1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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A newbie with a (hopefully) helpful story



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