My Story

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My Story

Postby dont on May 11th, 2004, 4:09 pm

My story is this: 12 years ago at age of 24 I had panic attacks brought on by . what I think was the stress of my parent's divorce. My mother fell apart at the seams and I was very angry with my father for a long time. I started having attacks and started twitching all over then. I went to therapy and took Prozac and Xanax and recovered. I have ALWAYS had health anxiety since I was a child. I always thought a head pain meant a tumor, you get the picture. This was in 1992. Fast forward to January 2004, married to a wodeful man, have a beautiful 2 1/2 year old daughter, nice home, good but sometimes stressful job. I got a swollen lymph node in my neck in December, I went to the doc after worrying about it a week and was told it was nothing. X-mas day, back started to hurt that radiated to my side. I googled flank pain and found lymphoma. On January 5, went to doc. She did a urin dip stick test and said I had blood in my urine and said it could be kidney disease and that she wanted me to come back in one week for a full blown urinalysis. Went back in a week and it turned out to be nothing (probably menstral blood )I went into full blown panic attack during that week with immediate uncontrollable twitching. When I started to twitch I thought I remembered that I had twitched 12 years ago so I called my GP and requested my 92 medical records. Low and behold in black in white even in quotes it said, "c/o uncontrollable muscle twitching, extremity cramps, weakness." Back then there was no internet so I accepted what the docs told me and got better on the Prozac. This time in January I google twicth and find ALS and shut down basically. I even felt numb toward my family. Thought I'm going to die so what's the point. I went to ER twice. Once in Feb. and once in March. Had CT scan of brain, blood work, chest x-ray all came back normal. Had same set of test in March, normal. Was sent to cardiologist for cardiolite stress test and treadmill, normal. Went back to the Psychiatrist, went on Zoloft and Xanax. Felt like I was on speed with the Zoloft so had to stop taking it, switched to Wellbutrin, couldn't sleep a wink so stopped it too, then to Pamelor, I could sleep but during the day had a resting heart rate of 135 so stopped it. Have another follow up the 17th of this month to discuss our next option. On March 12 first neuro visit. He examined me and asked me what my fears were. Advised MS and ALS. He told me to get dressed and come to his office. Went in there and he said YOU DO NOT HAVE ALS. By the time someone with ALS comes in here with twitching I can already tell it and it's one of the easiest things to diagnose in neurology, I kept asking all sorts of questions as to why my symptoms could not be slow progression and he kept shaking his head saying no it's not that. He said he was going to order an MRI of my brain with contrast and C-spine, thyroid and sedimentation rate. He did so and those test all came back normal. I was till not convinced I didn't have ALS (still am not there totally yet) I was aching so bad and I just kept reading those medical records from 12 years ago that I twitched then and had extremity cramps then and do now. The proble was the internet put the fear of God in me about ALS and leaving my family. I cried everyday until my husband said we are going to go back to him so I can see you examined and ask my own questions. Went back on 3/23 and he examined me in my husband's presence and explained why nothing in my exam exhibited ALS and said I did not have it and come back in two months. My next appt. is June 2 and of course I have wondered why if he is so convinced I don't have it then why do I have to go back???? That is my story. I am still twitching, the pain is a little better but I have worse days than others. I still can read those medical records from 12 years ago and it will still not sink in that it is not slow progression ALS from then and now it's here to claim my life. I am better even though it may seem like I am not I am but it is a huge challenge to get thru everyday.
dont
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