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MeaganGranger

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Hi Everyone,My name is Megan, I am 22... new to the site here. I am really glad I found this, because after 6 months of being diagnosed with BFS I still worry all the time, and this is one of the few places that has made me feel better. It's good to know that other people are going through the exact same thing!About a year and a half ago was when it all started, I had been seeing a neurologist about some headaches (non-differentiated) and had an exam, and MRI and an EEG done. He didn't find any abnormalities other than an arachnoid cyst, which is apparently absolutely nothing to worry about.Shortly there after I started getting some twitching in my thumb, that over the next year just completely irrupted over my whole body. I get it mostly in my legs, arms, hands, feet and back. However I do get it in the back of my neck the front of my neck, my face and on my torso. I also have the shakes, and often feel like I have tremors or a buzzing/ flickering sensation in my muscles. After about a year of this, and it getting worse, I finally got the guts to go back to the neuro... one in NYC where I moved. She told me that if we didn't live in a country with good insurance she would send me on my way confident that this was just BFS, but said just to make sure, and for my sake she would run muscle enzymes and an EMG. She said my physical exam was normal, except for a little hyperflexia, and so was the blood work, although I tested false positive for something called ANA, which I am following up with a Rhumetologist on. She did the EMG herself, and said it was so super normal that she wasn't even going to do it on the other side. After that I felt better for a while. I went back for a 6 month check up about a month ago, and mainly discussed my headaches with her, although I felt like the twitching had gotten worse I was afraid to say anything. After about a week of freaking out after my follow-up appointment I made another appointment to go back and talk about the twitching. She examined me and said she was not concerned at all.That was about 3 weeks ago and now I have a strange heavy or slightly overstretched feeling in some of my muscles. I get the shakes but have never experiences any weakness where I have been unable to perform a task. Does this sound normal to everyone? Does anyone else have this weird feeling?I don't want to waste the doctor's time because I know their are people with real disorders and serious diseases that need to see her (she is on maternity leave now anyway). I just worry sometimes that maybe she missed something, or that maybe the EMG just wasn't showing something yet, or that she wasn't thorough enough. Do I need a second EMG, should I get a second opinion? I feel like she is an excellent thorough doc, but sometimes I just wonder.I have had these symptoms for about a year and a half, and while they have gotten worse, I have not experienced any weakness. Should I still be worried about ALS? I was just wondering if anyone had any opinions. I just feel like I am loosing my mind most of the time!Anyone who could leave a response about the symptoms or there thoughts, I would be so grateful!
 
I have had this weird feeling now for over a year. It is a bit worrying but it could be worse!!!!! If you get an answer...let me know. My docs are confused... ;)
 
Hey Megan--All of that sounds totally like BFS. I have headaches (advil gel caps, seriously it's the only drug short of heroin that works on my headaches. Joking about the heroin, I heard that increases twitching) and I also have hyper reflexes. I don't think either are related to the BFS, but who knows.All that other stuff does sound like BFS. If you read some of the stickies on these forum pages, you will see how many things are involved with BFS beyond just twitching. This is a syndrome that is affecting our muscles, our nerves, etc. The obvious hallmark are the fasciculations, but expect muscle fatigue, soreness, tremors, buzzing, etc. Sometimes I feel an internal tremor (rhythmic shaking inside my body that I can feel but not see) and after I exert my muscles they shake like crazy. I was moving air conditioners and furniture around this weekend and my right arm went nuts with shakiness afterwords, but the good news is I could move air conditioners and furniture. ALS patients don't learn they're weak because they shake, they learn they're weak because they can't lift the teapot or gallon of milk. I also had the positive ANA that later came back normal. Apparently it happens with a lot of the general population, and perhaps more so with us BFSers. You've had the symptoms for 1.5 years, you're young and you're not showing super obvious weakness. All that equals no ALS. Twitching can get worse, it progresses sometimes but only to more twitching and perhaps some extra aches and weird feelings. BFS doesn't progress to anything worse than BFS.
 
Hi Megan. Welcome! I can't say much of anything that hasn't been said in the previous posts. The symptoms you mention could have been written by any of as at one time or another. BFS is constantly morphing and giving you new things to worry about, but strange symptoms are all part of the game. Your Dr. says you have BFS and that is what you have. The EMG is the definitive test, so with a clean EMG, you are golden. BTW, my neuro is currently on maternity leave as well. :)
 
I know, I think thats why I maybe freaked out this last time, because she is also switching practices when she comes back and I don't know if she'll be in my insurance anymore. She was one of the best docs, that I felt comfortable with! So we'll see... I have a follow up for my headaches/anxiety/twitching with another neuro who is also a psychiatrist, at that practice. I have also gotten into some behavior therapy, and am now taking magnesium supplements, so hopefully these things might help! Thanks everyone for your words and all the posts you make that reassure the rest of us!
 
Megan,I have a similar story to you except that I'm a little older, 37, and have had more extensive testing. I had a sudden onset of twitches and have every symptom you describe including hyperflexia/brisk reflexes and a positive ANA titre. I have had all the symptoms you mention since July 08. I am curious about the ANA being described as a false positive. The reason I'm curious is my neuros think my symptoms are related to an immune reaction. I had my first ANA test in September and it was extremely high 1:2000+. The second was a few days later and it was also very high 1:1000+. I had a third one in early October of the same year and it was normal. I also had positive tests for monoclonal gammopathy (another immune problem) and then a follow test that was negative. So I guess I wonder why you call your result a false positive. Did the doctor not think it possible that it represent a state that simply changed over time. I have no clear diagnosis but have also not been told to prepare for the worst. I am just being treated with .5mgs of Klonopin twice a day for my actual twitching not anxiety. I have no weakness but the nerve activity leaves me with a tight feeling that is really uncomfortable and this is another the main reason I take the Klonopin. It is hard to know exactly what you mean by a heavy/overstretched feeling. I don't exercise much at all as a general habit but the other day I did some jogging. I felt heavy but could do it. I just took the feeling to mean I'm out of shape since I remember feeling that way whenever I would try to start up an exercise routine like kickboxing etc. Once I got into shape the feeling went away. If this feeling came on suddenly even though your habits haven't changed then it may be something else. However, I've learned from asking my neuro so many questions that when your nerves are hyperexcited you can get all types of muscle/body sensations. I would guess what you are describing is just a product of what is causing the twitching. If you are not weak or impaired, the general advice given on this board is not to worry. If your symptoms are ruining your quality of life (apart from the anxiety about them), there are things that help. If this is you, please ask for advice on this topic separately since you will get many responses to run by your neuro.Krackersones
 
My ANA titre (or whatever that is) wasn't nearly that high.. it was like 1:325, and it had a speckled pattern which is really non-specific. The nuero didn't seem terribly concerned and said that it might be related to a syndrom called Schrojens (sp?), which can present with the speckled pattern. So, she did some more specific testing for that sydrom that came back completely normal. She even said if it had come back positive it still wouldn't be a big deal. However she said she wanted me to see a rhumetologist just to make sure. She didn't seem really concerned about it, and if your neuro and rhumy don't either than I wouldn't worry too much. I have been told many people, especially women test "false" positive for this. By false positive I mean that you either never test that high for it again, or specific testing shows nothing sinister. I am seeing the rhumy at the end of June. I have a feeling if she felt it was anything to seriously worry about she would have tried to get my in ASAP, and that is not the case.
 
Hi MeganWelcome to the site. I am a BFS sufferer but also a doc and would agree with your neurologist that the ANA pattern you describe is unlikely to be of any significance. I have lost a lot of sleep over an oversrtetched and heavy feeling in my right leg.... I was sure that this was a terribly ominous sign. I was checked out by a neurologist today and the examination was entirely normal and she was sure that my calf symptom is of no sinister consequence at all. So try not to worry too much about this. In my case, I have been overdoing things recently - lots of self-testing in an effort to reassure myself that I am not becoming weak. My neurologist and I both now wonder whether the feeling I have developed in this calf is a result of overdoing it. Good luck Simon
 
Thank you Simon, that is reassuring. I am hoping maybe the rhumy might have a comment about the BFS as well, and if she thinks there might be anything that could help relieve some of the symptoms. I try not to jump to conclusions or self diagnose, because those are my BIG problems, but I have heard people theorizing that BFS could be related to some non-serious immune issues.
 
Megan,Thanks for the info on your antibody test. Yes, my tests were a lot higher than yours. I saw a rheum. and he did not see the need to do anything other than test for specific antibodies for other diseases none of which came back positive. The only antibody test I've been positive on is the ANA. I would guess I've had 20+ tests for specific antibodies and all were negative. I do think the ANA test is likely related to my nerve/twitching issues but of course there is no proof just speculation given that my numbers were so high and occurred at the same time as my symptoms. I also had a speckled pattern. I guessing it an antibody they don't have a test for yet.Krackersones
 

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