3 Years of BFS: Worrier's Woes

[LindsayCohen7]

I've had this BFS thing for three years, and for the most part am doing well. Number of twitches definitely down, almost non-existant at times. Problem is that like a lot of us, I'm a worrier. I seem to have a longer than usual list of weird medical things for which docs can't find answers. Two years ago I had a headache behind my left eye for over a month. In the fall/early winter I get pain in my chest and sternum which an endoscopy showed wasn't acid reflux but does go away. A year ago my vision was weird and I was diagnosed w/dry eye. Along w/the tingling and usual BFS stuff, this always brings me back to worrying that I have undiagonsed MS. I'm anxious right now b/c I have a cold sensation between my shoulder blades that comes and goes. Basically I'm looking for something like the "BFS vs. ALS" that's on the Aboutbfs article. And whenever I read the things here it calms me down. I have to get over this fear!Thanks to all...

 

[EyeoftheWild]

Hey, Linda. A fellow forum member, LisaLM, wrote the book on helping people who were worried about MS. She was actually diagnosed, incorrectly, as having had MS and they began treatment on her. Later on it was determined that she did not have it, but rather bfs, which has its own odd collection of symptoms. Look up her old posts, she is an amazing woman, and smart as hell. The pain in the sternum is common. I've had it, LisaLM had it, and apparently it can be caused by silent reflux (reflux that doesn't show up), muscle related, or the Coxsackie virus. All the symptoms you are describing I have either had personally, or have read about, numerous times, on this board. So, you are well, and how great is that? )

 

[LindsayCohen7]

Thanks Basso! I know how lucky I am . When this all began 3 years ago I, like so many on this list, thought I wasn't going to make it. I was so naive that I thought if something physical went "wrong," doctors would identify and then fix it. Every once in a while something makes me scared - a completely normal reaction I guess, and coming here and having someone tell me to calm down really helps!

 

[CosmicVisitor]

have you had an MRI with contrast to rule out MS ? If you haven't and plan on it.. get it done in a 3T MRI, not a 1.5.. also make sure that they use PROHANCE contrast and not Magnavist, optimark or one of those that cause nephrogenic systemic fibrosis.. the 3T MRI will find things a CT can't even find... Further more.. I have a friend who actually has MS and she has not ever had fasciculations.. twitches of a finger, toe, eyelids and a sense of unsteadiness when waking up in the AM.. sometime she slurs her words like drunken then after a while gos back to normal.. MS is one of those conditions that mimics others and sends doctors looking in the wrong place often.. Headaches that come and go have NOTHING to do with your brain unless it's constant and along with other symptoms such as dizziness or syncope... My Neurologist is also head of a pain clinic and has told me that most headaches are actually caused by something outside of the brain such as eye strain, neck muscle spasm or for that matter anywhere in the body.. You can get a headache from having gas... it's referred pain.. let me ask you this... before the fasciculations, would you have even cared about a headache, or a cold sensation or anything odd like that? Noooooo .. probably not... we all have weird crap like that happen... you cant go associate every sensation in your body to a terrible disease..it's called somatization.. look it up... seriously though.. why compare BFS to ALS ? They share only one thing and that is the fasciculations... You don't go to the hospital every time you have a fever and cough do you ? fever and cough can be tuberculosis, meningitis or Bird Flu and many other life threatening illnesses..... you see.. the thing with BFS is that it is an anxiety driven condition.. it's your body expressing things that you have repressed... it will pass, you will get better.. just like the rest of us...

 

[EyeoftheWild]

Hey, CosmicVisitor, long time no read. You have a lot of knowledge about the various types of tests that one can have "just to be sure," but what about that machine that has yet to be invented, that will actually be more accurate? Perhaps there is an MRI machine that will find things out that won't develop for another decade or two. At some point we have to accept that we can not know everything that is going on physically and get on with the usual things in a life. Most of the serious ailments show indisputable evidence of disease, and so going beyond this only furthers a kind of obsession with our health. One thing that bfs has taught all of us is that it does make us feel a bit physically odd at times, but we are still able to function perfectly well. ) Basso

 

[AllGoodHere]

linda- Are your eyes still dry? I knew someone years ago that had dry eyes - he had Sjogren's - which can also cause peripheral neuropathy...most people find it manageable with treatment as I understand it. There was an article in the NYTimes not too long ago - it is supposedly more common than once was thought especially among women.here's a link from the Mayo ClinicEyeoftheWild - 100 years ago ago people just lived with this stuff, and most people were too occupied with the essentials of life to worry about such things. Like my symptoms - the specialists always ask if anybody else in my family tree had muscle spasms, cramping, soft tissue damage, pnhe and I really don't know. I always think - hey if they did, it didn't matter - they still had to bring in the crops, teach classes, deliver the milk, get the kids fed, and would have just said they had a pain that day and went on. Most working class people didn't have the luxury to do otherwise. I'm sure most of us cope and get on with life, but we now have the ability to try to figure it out and make our lives better and hopefully less painful. There's no way I'm going to let this rule my life; that means sometimes ignoring it, but other times making sure it's not something that I can get treatment for. There's a balance in there - it's not always easy to see where it is or should be.

 

[superbat923]

3 years ago I had the MRI with contrast, to rule out MS. I'd wish I never did!Unfortunately they found a few very tiny "atypical" lesions. The result of this is that I have to go back once a year (went 3 times) to have a control MRI just to be sure. My twitches are not so bad anymore and in general I just feel fine. I decided to leave it like this. One of the members here who is radiologist wrote that they see those tiny lesions all the time, about 80% of the cases! I don't want the stress anymore from going to the hospital, have the MRI, wait for the results, spending too much time in neurologist waiting room etc.I just go on with my life and enjoy it more and more every day.Important for the ladies here. I am in menopause and a lot of the symptoms of menopause actually mimic MS symptoms or the other way round. Just take this into account.Amica