Crazy Year: 10 Months of BFS

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inskizjohnnyjobinski

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Hi...What a crazy year. I am telling my story (long). Comments are ok :) I know most of you have gone several years and more with BFS. 10 months now with crazy symptoms. I really REALLY hope I belong here. :unsure: It started on sept 09 with a sudden electric shock against my head. Was surprised I was alive. It continued with pins and needles all over my body. Feeling of deadness in right leg ++++ symptoms. Got MRI, gastro, blood work, etc. Alot of the symptoms went away, and up came fasics. Everywhere but most in thighs. In tounge, face etc. Did not think we had all those muscles. Went to neuro. Everything was fine but right leg had a "slow reflex". Got EMG of left side. Came out clean. I was releaved until I found out that it was the right side that is the problem. New EMG. Came out clean. Time passes. Feeling of excessive saliva. Trouble swallowing. New EMG of tounge. Came out clean. New symptoms in May 10. Weekness in calve right side. Probably percived, but it feels like my right calve is totally without support. When testing leg I can not say it is week but it is sore. New EMG of right leg. Well he found spontanious activity on the muscle in front of leg (the one that lifts the foot an toes up) but it was completely normal he said. Would not see me again.Well here I am now. New symptoms are mild cramps. Still fascics. Feeling of horseness. Some coughing(not related to food or liquids). Numb big toe. Sore calve, I am still working out. Not in good shape. My leg is carrying me but it feels heavy and hurts. Can someone relate? Have not read anything like my story.When and how did you manage to trust your neuro?I have followed this forum for a while. I did not want to register because I knew I had .... Hope this is the way out of the fear (or else I will be "the one" you are talking about)I am a 30 year old male. I have to tell you that prior to this my dad got cancer (died 23. of dec). Wife got pregnant and I was working 24/7. I am just so tired everyone tells me it is in my head. Maybe it is, but I have to find out if something else. Hope I belong here. :D)
 
Welcome Sjob, good to hear you don't have A word, sorry about your other symptoms and also sorry that your father passed away. You've had a rough year, some of your symptoms I can relate to, others not so much. I have been twitching for five months now and seem to be getting a little numbness lately, but maybe its just that I have been paying alot more attention to what has been going on with myself.
 
Good to hear from you guys.... :D) Made my day.In the beginning of my symptoms I got bad anxiaty. I found the darkest place in myself. Did not thought it existed. My wife and family suffered. For what? I do not have I diagnose. I decided to leave my family and others out of this. But it is heavy *beep* dealing with this alone. Good you mentioned tightness. A big problem. Whats made me finally come on here is that I am in a way not going downhill after 10 months. Everything is working but it is weird. Basketcase diagnoses :LOL: I think that is really what it is. But it sure is something wrong. Think we all can agree.
 
I can relate on a few things that you have talked about. I am still scared, but it is getting better (I think.....) I too have thigh twitching, and my tongue quivers on the right side when extended. I think the tongue thing is normal, but who knows. I have not had a doctor look at it. I also get the excess saliva thing, and have had the electric shock feelings. I get twtiching on the left side of my face and when I open my mouth my bottom lower lip quivers for a few seconds and stops. I had Bell's Palsy so this may be related. I have not had any voice problems or choking, but I do have a feeling like there is something in my throat, and my nose is always slightly congested. I feel mucus in my throat some times. I have also had the cramps and soreness that you talk about. All that being said here is what I have been told....without true weakness they can't diagnose ***. This is what my neuro said today. He also said twitching is not an indicator of ***. Here are some things I ask myself. When I get soreness have I been "testing" that muscle. The case has always been yes. With the saliva thing I find that I am tensing my face up, when i release the tension alot of saliva spills into my mouth. If I can keep it relaxed I am ok. Who knows what is causing all of this, and it is scary, but at least we are not alone, and not completly crazy!
 
:LOL: Hope you are right about the crazy comment. I sure feel crazy at times, but it is (sadly enough) good to here from people who can relate to what I am going through. That is actually what I have come to also. No weakness, no reason to contact neurologist. That brings me back to the testing. It brings relief to know that I do not have clinicle weekness, but of course the side effects are soreness and even more focusing on my body. (have not tested for 2 days :) )Hope we all can some day learn to live with the symptoms. Like it is a part of us. Because I do not think the symptoms will go away, at least not for me. :) Take care :)
 

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