bfhopeful2
Well-known member
I decided to post this here as many people check this part of the forum first and I think it will help some people. It has actually been more then 2 years, but I waited to post this before having my last emg this morning. Some of you know me and some people may just be hearing from me for the first time so I am going to give you a quick background of my story.First off I am a chronic hypochondriac. I worry about my health constantly; I always have and probably always will. I have had many imaginary deadly diseases throughout my life, all of them were just in my head. It is not my fault really, I come from a long line of worriers. This all started for me back in April of 2009. I was going through a horrible divorce with the ex-wife. We were fighting over everything; kids, money, business, cars, house etc. If you can name it we fought over it. I didn't want the divorce, but had no choice. We had gone too far and it was time to walk away. I was very depressed and was exercising hard to help with my anxiety and depression. I was eating like crap, drinking too much and not getting enough sleep. I was 31 and dating a 22 year old bartender, trying to keep up with her lifestyle was difficult and probably not the best thing to do when I was already so down. In a nutshell I was burning the candle at both ends and not taking care of myself at all.Around the same time my sister was admitted into the hospital for what they thought at the time was cancer. Thank god that was not the case, but the stress of it all must have been too much. I developed my fist twitch that day. It started in my left bicep and went non stop for three days. I went to my psychiatrist and explained what was going on and he suggested that I see a neurologist because it was beyond his scope. Of course that freaked me the “f” out and I made the appointment. My appointment was about 1 week out so I decided to just drink my way through the week and see what happened. During that time I developed severe insomnia. I did not sleep for almost 4 days. It got to the point I was delirious. Every time I would fall asleep I would jerk awake with what I found out later were called sleep starts. It is a very uncomfortable feeling, anyone that has experienced them would agree. So I went back to the psychiatrist and told him my new symptoms. He prescribed me Klonopin to sleep and again suggested that I see the neurologist as soon as possible. My appointment finally came and the neurologist was just as puzzled as I was and ordered a battery of tests. At this point my sleep was bothering me more then the twitching so he ordered an MRI of the brain and spine with and without contrast, blood work and most importantly a sleep study. To my surprise everything came back normal. Well I was not f’ing normal by any standard. My sleeping had started to get more regular, but I was still having major issues with sleep starts. I just had enough Klonopin in me to allow me to go back to sleep after every jerk.The twitching at this point had stopped in my bicep, but spread all over. They weren’t only annoying, but very painful as well. They actually were popping so hard they hurt. I remember trying to watch a movie with the girlfriend and I had to leave the theater I was so uncomfortable. I made another appointment with the neurologist and presented him with my twitching. He ordered an emg and to my surprise everything came back fine again.I knew there was something wrong with me. They must have missed something, this was crazy and not normal. No matter how anxious I was there is no way anxiety could cause this, no way!I waited a couple months, changed some meds – tried neurontin etc., but nothing helped. I finally made a decision to see the number one ALS specialist in my neck of the woods at the University of Miami. By the way, I never suspected ALS until my Dr. mentioned it and I found this forum. I got an appointment with Dr. Verma, but had to wait about a month before he had an opening. During that time my neighbor got diagnosed with ALS, my ex-wife’s uncle got diagnosed with ALS and an acquaintance of mine back from Iraq also got diagnosed with ALS. It was obviously an epidemic that no one knew about! But I was on to it!My appointment finally came and Dr. Verma looked at me and said that it was BFS and not to worry, but he had to watch me for a while to make sure no other symptoms popped up. What great news! He had to watch me for further symptoms! Of course that is the only thing I remembered from the appointment, not the fact that he diagnosed me with BFS.On my next appointment with him he ordered another EMG after witnessing the twitching himself on my calves. The EMG came back with some minor abnormalities. I had some chronic denervation in both calves routing back to L5/S1. He assured me it was an old injury and nothing to worry about, but of course I knew different. The hell with his medical degree, I have the internet and know the truth. They can’t hide their conspiracy from me. He suggested that he follow me for another year and see what was to come of it, but of course “be calm, it is probably nothing” were his words to me. Probably nothing meant absolutely I was going to die.The year came and went and no new symptoms presented except for some numbness and tingling. I almost forgot the itching, yes my scalp especially itched all the time. He saw me for the last time this February and told me I was fine and not to come back, again a BFS diagnosis. I asked for another EMG and he wouldn’t give it to me, I was bummed. How could he not give this to me, I needed it! Instead of leaving happy, I left with a sense that I was cheated some how. I didn’t have ALS and I felt cheated?So this past month I said enough is enough. I went back to my first neurologist who agreed to do the EMG again. I actually had it this morning. And guess what? It came back 100% fine again. Two years of twitching, 3 emg’s, 5 mri’s, enough blood work to kill me if taken all at once and nothing, not a single thing wrong. I also forgot to mention that I even saw an environmentalist doctor for heavy metal poisoning testing and that came back normal as well. In the end, two years later, countless sleepless nights, crying episodes, chronic anxiety, hysteria, thousand of dollars and finally some peace of mind. To think that all I had to really do was read BFS in a nutshell ?.To all the people just getting started with this journey take it from me, if your doctors tell you your fine, believe them. There is no mystery disease, there is no cure not uncovered, there is no simple fix. It is all anxiety, it is in your head. It won’t go away until you let it go away. And for some, like myself it probably never will go away. But who the hell cares, YOUR NOT DYING!I don’t care if your joints hurt, the twitching is unbearable, you get numbness, tingling, perceived weakness etc. etc. etc. – If your doctor has run the tests and they come back fine, it is anxiety. It is psychological. It doesn’t mean your crazy and the symptoms are very real, there is just no physiological explanation for them. It is our Fibromyalgia. Fibromyalgia is a condition that really depressed people get. It is when the depression becomes so bad that the body creates pain. Funny thing is they treat it with Cymbalta, go figure. BFS in most cases is the same thing. Anxiety created it and fueled it, end of story. You are all fine and so am I. Don’t do what I did!!!! It is hell!!!. Work on your anxiety! Read BFS in a nutshell and as Eddie Murphy once said, “have a coke and a smile and shut the “F” up!”Sorry had to add that ? Love you all. Best wishes.
I have only had two EMG's and alot of blood work, I have seen two neauro's and they both say benign so I need to get to the place you are somehow...Thanks and God BlessRandy
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Any advice you can lend from someone trying to break the health anxiety cycle? I've always been able to do it in the past, but the constant symptoms have me on a roller coaster this time. Again, thank you for your post!