Happy to be Back - 7-year Journey with BFS

Millenniumy

New member
Hi to everyone here,I used to visit the site years ago [I am an old timer]. My twitching started nearly 7 years ago after my 1st child was born. I spent the first couple of years on this site a lot, looking for support and to ease my worry. I had been to countless neurologists over these years, MRI's, EMG's, with no muscle weakness then on any of my neuro exams. I was told I had BFS. My symptoms would come and go. I'd get a flare-up that could last for weeks or months, but then it would go away or be so minimal that it never really bothered me at times. I learned to live with it, and definitely not worry about it.My latest situation has me worried again, however. I may have a combination of things going on, but there is more than just the normal twitches [which I also have again]. About 3 months ago, I developed a twitch in my left eye, that then was followed by my right eye. I twitched in those eyes for 2.5 months. Left eye was every day, almost all day long, and right eye was more intermittent and some days did not even bother me. At about that time, I started feeling some deep pressure in my head, almost like it was behind my sinuses. At that time also, my top teeth went numb, and still are. I went to an ENT doctor re: my sinuses -- he put me on meds and did a sinus CT scan, which was normal. Nothing changed. In fact, things got worse. Finally the eye twitching got better after 2.5 months, but now I have facial twitching on the right side of my cheek, and some numbness on the right side of my mouth, including right side of my tongue and going across to my ear. It's not totally numb; feels like I had a novocaine shot that is wearing off. This has been for about 2 weeks.I went to see my dentist about the numb teeth and he said my teeth were okay and that I should see a neurologist. So here I went back again to my neurologist, who was a little concerned about the numbness on the right side of my face. He said that sounded neurological. In the meantime, my arms had started twitching a lot in the last few weeks, which wasn't concerning me -- I just thought it was BFS again, probably as a result of the stress I was having with my head and face issues. He's ordered some MRI's and bloodwork, and did another neuro exam. To my amazement, I had some weakness on the right side of my body. My shoulder/deltoid muscle was weak, as well as my hip/upper part of my right leg. He tried many times in these spots and the more times I couldn't resist his strength, the more panicked I felt.I left his office in an absolute fog, worried and scared about what was happening. I've had BFS for so many years and had come to accept it and not be afraid anymore. Then something new happens -- and granted, there is more going on than just twitching this time, but I am so confused and just hoping that all of this will amount to nothing and just go away. The most frightening part of this to me is that I had actual muscle weakness. I have had so many neuro visits in the last 7 years with my BFS symptoms and have probably seen at least ten different neurologists in those years, and I never had any weakness on any of the exams. I was shocked, and so was the doctor. He did not expect it, either. Now the twitches are scary, and every weird thing that is going on is much more frightening than before. I have stayed away from researching ALS or MS since all of this has happened last week. I'm starting tests tomorrow and just hoping for the best -- that whatever this is, will resolve or can be treated.Thanks out there for reading. Not sure where to turn right now. I have BFS but something else is going on right now, too. I wish it was just the simple days of twitching with no muscle weakness. As much as I worried back in those early days, I would give anything to just be in that boat right now. Kate
 
Hi Kate,First let me say that you shouldn't jump to any negative conclusion with regards to your sxs. There are many reasons why you could have the sxs you describe, so please don't put the cart in front of the horse. Take the tests and allow the process to come up with an answer to your issues....Keep your head up. BTW, what user name did you use on the site in the past?Take care,Gary
 
Hi Kate, I'm sorry you are having trouble. The truth is, those of us with bfs are not immune to other conditions, but, as Gary said, there are many things that could cause your symptoms. It certainly doesn't sound like **S, considering the numbness. Interestingly, I went through a period of facial/jaw/tongue and teeth numbness during one of my many health-scares. No one ever found anything, but one neuro suspected it was complex migraine, which can ALSO cause clinical weakness. I had one young guy in the hospital who was temporarily paralyzed on one side of his body from what turned out to be a migraine. So, try not to jump to any conclusions and just wait for the tests to reveal something more conclusive. In my case, the numbness went away all on its own. Let us know how everything turns out. Blessings, Sue
 
Hi, Kate. The simple fact is, you wouldn't have come back to this board if something terrible was going on. Your doctors would have found the problem and you'd be adjusting your life accordingly. This site would be back in the fog of some distant dream, if you thought about it at all.So, you are twitching and feeling numbness. Many of us have experienced that and it isn't that big of deal, even though it is a drag. I had that numbness big time in my face and it was because I was hyperventilating. I was scared and so my lips and tongue got all freaked out. I've also had the pressure you speak of. I get it above my eyes and sometimes I feel like I'm going to faint. Maybe it is sinus related, maybe it is bfs, or maybe it is sudden response to something, but the fact is I'm well, and you are too. You description isn't of weakness. If you were truly weak you would notice it big time. It doesn't sound like the doctor made a big deal out of it. It really means that you were nervous and that the doctor is stronger than you are. When you can't hold your coffee cup, at all, then you are weak.You don't have als, ms or anything else. This latest episode will fade away and you will be back to your regular bfsing.Basso
 
Kate,There are a lot of reasons for weakness that are not necessarily anything pathologic. The symptoms you describe in your face can be due to BFS or even a cervical spine problem which by the way can also give you some weakness on examination. It is important to not hear those hoofbeats and think unicorns. Wait until your testing is done. I am certain that the findings will not be as bad as you are projecting. There are quite a few of us on this board who have these very symptoms. You are pinning everything now on the weakness and there are so many very run of the mill things that can do this. Please let us know and in the meantime....try not to project too much.Smooches,Kit
 
I get numbness, twitching and sometimes hypersensitivity in the left side of my face, it's pretty clear that it is coming from nerves in my neck, if it can go downwards into your arm it can go upwards into your face too if a nerve is compressed in your neck.
 
Hi Kate--Sorry to hear you're struggling with new symptoms. I don't think there's any obvious answer to your questions and issues, and as annoying and frustrating as that can be, it's a good thing. A doc once told me that those who are easily diagnosed are in the worst shape when it comes to neurological conditions. Those who go years and years with confusing symptoms usually have something going on, but not anything truly insidious or serious. All you can do at this point is follow up with doctors and see if they can provide you with answers. If they can't, be happy that you are not diagnosed with anything bad. In the meantime, try not to worry or have too much anxiety, ESPECIALLY about als, because this sounds nothing like it at all. 7 years, other symptoms like numbness, I'm sure you know enough about this stuff to know you do not sound anything like an als patient.
 
Hi kate... may I ask did the doctor officially tell you that you showed some clinical weakness? How did the tests go? May I ask your age? Could it be hormonal? Like perimenopausal? I have weird symptoms in my face too like nose tighness, mouth and lip and tongue twitch. My lips vibrate a fewseconds after I eat or drink and not sure why. I forgot to mention this to my doc but will next time.Hope you are feeling better.
 

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