My Story - First time post

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My Story - First time post

Postby CheckRaise on August 9th, 2004, 12:39 am

Well well..
I never thought I would be posting a "my story" online, but after finding this site and reading for close to three hours now, I believe I should write. Up until three hours ago, I was self diagnosed with ALS.. but not so much anymore, thanks to this site!

My symptoms started in June of 2003, 14 months ago. I was 31 at the time. It started with a thumb twitch which would come and go at will several times a day. I didn't think of it much then. After a few days of thumb twitching, I decide to do something which at the time seemed smart and perhaps even responsible, I decide "check out" my new symptom on the internet. It didn't take long before I read the ALS symptoms page, and the 3-6 years life expectancy that came along with it. I was now sure I was dying.

I would like to go back a few years for a moment. I was 20 years old. Life was good. I had a good job, a great girlfriend (whom I eventually married). One day I was driving home from her house when I was suddenly hit by an extreme sense of absolute terror which lasted about 3 – 5 minutes. I thought for sure I was having a heart attack or a stroke or something that would take my life in seconds. I had to pull over and wait for it too pass. I almost used my cell to call 911. After a few minutes I felt better and started driving again wondering what just happened. I excused it as a one time event, and tried to forget about it. The next week it happened again, and the following week again. I went to my family doctor and was told I was experiencing panic attacks. I was prescribed six Ativan pills. The panic attacks never happened again, up until June 2003, 11 years later.

High anxiety and panic attacks came on strong soon after the fasciculations, mostly because of the fear of having a major neurological disease. I kept this secret with everyone, including my spouse, thinking that I can get through this myself.. just a matter of time. By October of 2003, the fascics were so prevalent it engulfed my whole day and night. I tried to think of a way to tell my wife that she may need to find a new husband in a few years. The fear was real, I convinced myself I was headed towards a fight with ALS which would, in the end, not be able to be beat. Psychosomatic symptoms began. I started feeling weak in my arms, and my fingers. I started the “strength test” routines which most people talk about here, toe and heel walking. I would take stairs instead of elevators to prove my legs still worked, I would carry heavy things to prove my arms still worked. I found myself doing finger lifts at my desk to prove I could still use my fingers. Then, in November I told my wife and I went to see my doctor.

I told my doctor about the muscle twitches, but mostly the anxiety. She told me not to worry about the twitches, that they were a part of the anxiety. I have a family history of anxiety with panic attacks (four out of seven siblings, my dad and his dad). She referred me to a doctor who specializes in anxiety and a week later I received the first diagnosis in my life – Generalized Anxiety Disorder. He put me on a prescription called Rivotril, which is a benzo, same as Klonopin. This helped out immensely. He also taught me mediation skills, to train the brain to think in the “now” more than the future. I have not kept this up, but will try again cause it makes sense.

Now that my wife knew about this, we talked about it a lot. I was feeling better with the Rivotril, and decided to make a few changes in my life. I decided to lose weight. I was quite over weight, and was told by my doctor that being my size would not make things easy in the future. I knew she was right. On Feb 25 of 2004 I began to diet. I am now 70 pounds less I was when I started, and have never felt better in my life. I went off the Rivotril about five months ago, but recently had a major relapse with BFS and it’s scares. I felt myself falling back into a funk, like a depression, fear of death et al. I started to take more Rivotril again, because I didn’t want to ruin my diet. THEN.. I found this site, and it was the bingo that I needed. I do not have ALS. I am not going to die. I have an annoying condition known as BFS. I will have to deal with it. Today has been a good day!

Thank you to all who have posted, and I hope this post may help some.

Richard
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Postby Thia on August 9th, 2004, 8:53 am

Wow. What a great post you've put together. I can't tell you how similar your story is to my own. Right down to the panic attacks in the car (I used to get them EVERY DAY after work before I went to day care to pick up my kids, right when I got into the car every time). It sounds like you've been very pro-active in your treatments and have the advice from good doctors and medication when needed. I too thought I was dying of some terrible illness (ALS, MS, you name it) until I found this site and discovered that many people suffer from these strange symtoms and have lived to tell the tale!
Keep well and when you find yourself headed down the dark tunnel of anxiety get right to the appropriate health care professional and get well mentally. The physical stuff will come later! and the twitches will subside as your mind heals itself. Stay well!
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Postby Stephanie on August 9th, 2004, 8:58 pm

Your story is so similar to many of ours. Isn't this web site the best? There are so many people here that understand you and can pull you out of your dark gloom & doom days. I come here for my "therapy". It always helps!
Stephanie
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Postby garym on August 9th, 2004, 10:14 pm

Richard,

Sorry you are having such a tough time. You story sounds like so many I've read over the past year. I think that you will find some relief at this site.

Take care,

Gary

BTW, how did you lose 70 pounds? That's amazing!
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Postby amy_twitch on August 9th, 2004, 10:54 pm

Welcome Richard!

Your story does ring true of so many on this board. For years, I watched my dad, his two sisters and my cousins suffer from GAD....I thought they that it would never happen to me. Fast forward to me now being 30 and married with two small children. I thought I had a terrific life with everything under control, until one day when my hubby was out of town. My kids were watching morning cartoons, and wham, I got a strange chest pain which zoomed into a full blown panic attack (you know how that goes--and I too almost called 911.) Luckily, my folks live close, and I called my dad who was able to get me breathing into a paper back to help the symptoms subside until he could get to my house. Off to the ER we went--and it was all anxiety, just like my dad assured me it would be. He suffered from it through most of his 20s and 30s and rarely has any relapses these days.

Soon after my first anxiety attack, my fasiculations began...and here I am 10 months later. Thank goodness I have been able to keep the anxiety attacks at bay....I think having seen so much of it in my family enables me to truly comprehend that when I feel 'physical' anxiety symptoms coming on--it's just that--anxiety, so I can ride it out and not get spun out of control into a full blown attack. I do have xanax and ativan on hand just in case. My fasiculations have been all over the board over the past 10 months (feet, calves, fingers, elsewhere)....and finally, they seem to have subsided for the most part. Of course, this is after three neuro consults and many a visit to my very patient GP (bless her!)

Anxiety seems to be the main link of everyone on this board. If we can control the anxiety (and learn to live in the present instead of worrying about the future--as your therapist mentioned) we'd be a lot better off. I have been doing exactly this, and my symptoms are improved immensely over the last month.

Everyone here is extremely supportive--and I know you'll be able to offer a lot of needed support in return. Welcome again--and look forward to seeing your future posts!

Amy
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Postby CheckRaise on August 10th, 2004, 12:36 am

Thanks for the posts guys! I have been having a riot reading everything on this site, so many similarities! (right down to sticking my tongue out in my rear view mirror to check for atrophy and not thinking about the person driving behind you! LOL)

garym wrote:Richard,


BTW, how did you lose 70 pounds? That's amazing!


Gary, to answer your question. How did I lose 70 pounds? Started on atkins way of life, ate very few carbs for three months. About 20 grams a day, all in the form of veggies such as spinach salad.. funny thing though I never got sick of spinach salad! still love it. Atkins is a lot of protein, and I won't get into the chemistry of the diet here, but it makes sense. The only problem I was having was a severe lack of energy. I decided to switch to another diet called the "south beach" diet. I highly recommend this diet to anyone who is considering losing weight. It allows WAYY more carbs, but only good ones NOT bad ones such as white flours and sugars. I have resigned to the fact I will not be enjoying baking for quite some time. I have switched to artificial sweeteners in my coffees and teas made other smarter choices.
The MAIN thing to losing 70 pounds is to stick with it!!! I also treadmill once a day for 20 minutes minimum, burning about 300 cals each session. The treadmill has two purposes for me. One... the weight loss/healthy reason, and Two.. makes me feel better mentally. I usually am on quite a high after a treadmill, and don't think too much about the twitching. It's also reassuring to know I can still walk/jog effectively, although I am trying to ignore this reason, we all know why :|

I wrote quite a long post on my weight loss on some low carb forum some where, if I find it I'll post the link.

Again.. thanks all for your posts and your welcome. I can't even begin to tell you how much of a better day I had today than I did before I found this site. :)

Richard
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