My story (new member)

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Postby wakefield on August 19th, 2003, 10:07 am

Thanks for the replies, everyone.

"dlog", It sounds like your husband is experiencing a lot of the same symptoms as me. I remember going to sleep at night, and awaking to find it was extremely difficult to lift my arms. This would happen during the day also, with burning sensations radiating down them. I thought, "I can't believe how fast this is progressing."

Then, I realized that weakness that comes and goes is not ALS. Remember, in Aaron's infamous "BFS in a nutshell", it mentions that there are no good days and bad days with ALS. Exercise intolerance seems very common with BFS, but I attributed my symptoms to anxiety. Once I stopped worrying about the burning sensations and loss of strength in my arms, the problems went away. Here's a link to a website that helped me a lot in dealing with anxiety symptomology.

http://www.anxietycentre.com/anxietypan ... about.html

As you scroll down the page, you will notice that many of the symptoms that we face can be attributed to anxiety. I know that my anxiety level rose 1000% when I did so much reading about ALS. Pay attention to the sections entitled "Uncontrollable muscle twitching" and "Obsession about sensations or getting better".

BFS is a real condition. Exercise intolerance is a real symptom of BFS. However, I feel that in my experience, many of my other symptoms have definitely been exacerbated by the anxiety related to my fears of ALS. Just a thought.

Chris
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Postby PamT on August 19th, 2003, 10:41 am

I agree 100%. Anxiety/panic attacks can make you feel sensations that you're not used to feeling, which leads to more anxiety.

I truly believe that those on this forum are fine. I think that anxiety is our biggest enemy. Now, how you tell your brain that is a different question.

But I'm working on it.

By the way, I mentioned to my neurologist that having a beer (or 2) seems to calm my twitching. He agreed that it proves that most of the problem is stress, since the alcohol kind of mellows you out.
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Re: My story (new member)

Postby eric on August 20th, 2003, 6:32 pm

wakefield wrote:I've been lurking on this board for a while now, and figured I would share my story with everyone.

It all started around three months ago when I had some intense twitching in my right eye. As I am prone to do (aren't we all), I researched the topic and concluded this must be due to stress/sleep issues. The problem subsided, but a week later I awoke in the middle of the night with my right index finger twitching back in forth. I thought, "no big deal", and went back to sleep. Of course, I researched the topic, and what do you think I found. I woke two days later and felt a numb spot on my face. After going to the Emergency Room and having a CT scan and blood work, they said, "You need to see a neurologist".

Well, I got an appointment with a Neuro. He noticed the visible tremors in my hands. After having a normal exam, he asked, "Do you have any muscle twitches?" I told him that I had had a few, but nothing substantial. He told me that the twitches were an indicator of ALS.

Well, I'm sure you know what happened next:
Twitches from head to toe.
Deep depression for weeks where all I concentrated on was my mortality, and I lost interest in almost everything.
Hundreds of hours of research on ALS.
Strange symptoms that turned out to be transient (i.e. difficulty swallowing, burning sensations in palms and down arms and legs, difficulty raising arms, etc.)
Tons of medical tests (EEG, EKG, Echo, MRI, LFT's, Liver Sonogram, Lots of Bloodwork, and an EMG that was completely normal on my upper extremities)

This should make me feel better, right? Well, no. In fact, after receiving a diagnosis of "benign tremors" (whatever that is), from my Neuro, I have seen a specialist at a teaching hospital. After the specialist gave me a normal exam (he opined that it was stress/exhaustion), I have been experiencing constant twitching in my left foot for the past two weeks along with a weak feeling in my left leg (which I did not experience pre-fasciculations). My GP has started me on Lexapro, which has helped my mood, but not alleviated my twitching.

So, here I am just like the rest of you, wondering about my fate instead of going ahead and living life. I wonder if my symptoms are entirely pshychosomatic, or if I have a real disorder with only a few psychosomatic symptoms. Also, it seems like every time I read something comforting about the progression of ALS, and how my situation is completely different, I will also read the exact opposite information from another source.

Anyway, thanks for reading, and thanks for posting on this board. This is a haven for information and optimism. I appreciate any replies.

Chris

hi chris I would check for lyme disease based on the fact that you had a numb spot on the face,burning hands,twitching,tremers,twitching eye these can all be manifestations of lyme disease, if lyme has entered the nervous system you will get symptoms like above. and most people never know they were bit. check it out..
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Postby dlog on August 20th, 2003, 7:36 pm

Thanks for the replies to my message. I printed everything off for my husband along with BFS in a nutshell. He is feeling much more positive about everything and relieved as he waits for the EMG in Sept. (I am feeling much better too.) This board is so helpful to people like us who are just experiencing these symptoms. I am so thankful my searches brought me here. We never heard of BFS before but knew about ALS since my husband worked in home care and took care of ALS ventilator patients.

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