My (Mark's) Story - New Member

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

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My (Mark's) Story - New Member

Postby Mark on February 24th, 2003, 6:46 pm

Hello everyone.

I just want to start off by thanking everyone who has already been involved with this site. After finding your site this morning, this is the first time in a month that I am feeling some relief. It's been a great help to read about everyone's symptoms and experiences.

I am 45 years old and in good health. At the start of this past December, I developed a strong nerve twitch in my left forearm. It would twitch several times a minute, but I didn't give it much thought, because I figured it was just stress. It lasted for two weeks and then went away for about two weeks over the holidays. About a week into January, it started up again.

After about three or four weeks I started experiencing some new, more frightening symptoms. I was experiencing twitches all over my body. Not all at once (and not consistently), but sporadically. I would have them in my other arm, my thighs, calves, chest, eyes and back (I had one moment when both lat muscles started fluttering). More unnerving was a new vibrating sensation in my arms and occasionally in the back of my neck, and occasionally in my lips. There was no noticable shaking in my arms. They were rock steady to look at, but I could feel what felt like a low level electrical current running through them. Some nights I would go to bed feeling pretty good (with no twitches) and wake up around 5 or 6 o'clock in the morning with my arms buzzing (and/or twitching in my left forearm).

At this point I went to see my doctor. A number of different blood run-ups were done and they were basically normal. My blood sugar level was slightly elevated and one of my creatine levels was slightly up. In the words of the doctor, "as if my muscles were cramping, like if [I] had been on a strenuous run right before taking the blood tests." He felt it was probably stress related, but gave me a referral to see a neurologist, just to be safe and to rule out the nasty possibilities. He was very good at trying not to scare me, but the symptoms (as we all know) are good enough at doing that on their own. My appointment with the neurologist is in three days, but in the meantime I've talked to tons of people and been all over the internet trying to "educate" myself about what was happening to me. After weeks of looking at information about Parkinson's, MS, brain tumors, imune systems attacking muscles, muscular dystrophy and ALS, needless to say, my symptoms were getting worse with worry. As many of you would have expected, my symptoms did not match up in any classic sort of way with any of the diseases until I stumbled across this site (thanks to a doctor's post on a Cleveland Clinic's website mentioning BFS).

I still need to see the neurologist in a few days to rule a lot of things out (I've never been so anxious to get to a doctor's appointment), but feel much more optomistic. I don't have any muscle weakness or atrophy, no loss of coordination and the symptoms (although generally present) come and go. I do have a day a week where I am fairly symptom-free.

Anyway, thanks very much for listening. I would love to get some feedback from you. And thanks again for just being here. It's great to find other people who have had similar experiences.

Wish me luck on Thursday-

Mark
Mark
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dealing with bfs

Postby izzie on February 27th, 2003, 5:58 pm

Hi Mark,
Welcome to the forum. I know how you feel as I recently saw a neurologist and was very wound up with anxiety. I hope it went well today with your neuro appointment.
Your symptoms sound so like all of ours which I hope will give you some comfort. I cried with relief when I found this wonderful site. Just knowing you are not alone and that the condition is annoying but basicallly benign will hopefully help you to handle it.
Please let us know how you got on
best wishes
Izzie
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Postby Mark on February 27th, 2003, 7:44 pm

Izzie,

Thanks for the support and words of encouragement. The results were as good as could be expected at this point. All tests showed normal results. I've been scheduled for an EMG in early April to fully rule out ALS, but the doctor said she would be stunned if it was ALS. She said she "never says never" until everything is in, but feels very confident that I've got BFS (and not ALS). She did state that although typically muscle weakness or atrophy would accompany or preceed twitching , it doesn't necessarily have to. Not exactly what I wanted to hear, but I can't complain. It was a very good morning! I'll keep you posted as to how things develop.

You're right. The stress from worrying about the various possibilities can be extreme, as you probably well know. The relief I felt when I found this site was almost as extreme, but obviously in a very positive way. Thanks again.

Mark
Mark
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Joined: February 24th, 2003, 5:25 pm

Glad you came back!! and with good news!!

Postby reneeintx on February 28th, 2003, 1:07 pm

:D Hey mark,

Fantastic news, I'm glad all went well! Thanks for coming back so promptly. I not only worry about myself, I worry about other people.
How come the emg isn't til April :shock: Is she sending you somewhere else? University perhaps? The GP I went to knew I was not dealing with this twitching very well so she sent me to neuromuscular specialist(deals with als, parkinsons, movement disorders) He did the test right then. He did it himself, no technician.

My doc also said some *** patients present with twitching first. But very, very few. I didn't want to hear that either, in fact I debated on running out of the room with my fingers in my ears lol!
Did you get any med's for anxiety? I take them depending on how I'm feeling that day.

I have a follow up appt in April. I asked him why he wanted to see me again and he said to reassure me.... I'm still frightened.

Again thanks for the update,
Let us know about the emg?
Geena(should be known as doubting Thomas)
:lol:
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Postby Mark on February 28th, 2003, 3:04 pm

Geena,

Thanks for your concern and sympathy. It's hard not to doubt the doctors and the test results because it's such a creepy thing for all of us to be dealing with -- it can be so constant and unignorable (I think that's a word). Since finding the site on Monday my symptoms became less and less every day, just from the reassurance I took from it. By the time I saw the neurologist yesterday, I didn't have a twitch anywhere (the one time I wanted to be twitching). An hour after the visit, I started twitching again -- I think due to the huge stress release from what was, in the end, a very important evaluation. I was exhausted the rest of the day and somewhat depressed just having to deal with the uncertainty of all this. Today, despite waking up on the twitchier side of the spectrum, I'm starting to do better, partly due to a more relaxed frame of mind.

I don't know if it would help you personally, but just for your information, I'm taking a lot of vitamins and supplements -- B complex, Omega 3 & 6, vitamin C, multi-vitamin tabs, potassium, and cal-mag zinc. Potassium and the cal-mag zinc are supposed to be great for nerve health. The B tab is a great stress reducer. The Omega 3 & 6 are "fish body oils" and were heighly recommended too (I have one friend who swears her eyes twitch if she doesn't take them, and they never twitch while she does take them -- she takes two tablets 2x day and says it takes about a week before you'll see results).

I don't know about you (and others out there), but the last 5 years have brought on a huge increase in stress for me -- from a variety of different places. My view on this is that my twitching is my body's way of letting me know that I don't know how to handle it. I'm not saying that my twitching is the result of stress. I may have been a twitcher for much longer than I'm aware and recently (with all the stress) is just the first time that its become pronounced enough for me to notice. Anyway, although I've never been the type to use a therapist for anything, I am going to get some counseling. We all need a little more help than we're used to getting from time to time, and at least for me, this is one of them. I am very much an optomist and hope that just the knowledge that I don't have something that will kill me, combined with better excercise, diet and lifestyle will put these symptoms back into a dormant state.

Well, that was probably more of a response than you bargained for, but that's where I'm at. I'm feeling pretty good for the most part. I hope I can say the same thing next week, next month, next year . . . Wish me luck with my EMG next month (she may have just wanted to give me the feeling like I had nothing to worry about, although I would have loved to do it on the spot) and thanks again for checking in. I appreciate it.

Mark
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