TO ARRON

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TO ARRON

Postby Joe on September 7th, 2002, 12:43 pm

Hi, Arron! Thank you for your reply! You are a great helper for all of us!
:wink:
I went on Brain Talk forum and I found one of your posts of 15 days ago:

Thanks Jackie! I am a great helper to other's but when it comes to myself, I am the worst! I am the biggest baby on the planet when I get sick or have any health issues. My wife of 16 years has had SLE (Systemic Lupus) since she was 13. We have been together for over 20 years and we have been to Hell and back with that stuff so I started doing some serious research on SLE and both of us have stunned doctors because we are more up on it than most of the "experts". I can;t tell you how many weeks and months we have spent in hospitals over that Lupus crap and what she has been through is pure hell and should have died numerous times, but hung-on.

Well, once I started twitching and freaked-out over ALS, I started doing serious research on it as well as BFS and CFS. I have spent literally thousands of hours researching, read hundreds of thousands of posts, spent 20+ hours a day scouring the Internet learning as much as possible on the subjects for abpout the last 2 years. Show me any doctor that has spent that much time on one subject... They don't spend that much time on 20 subjects in med school.

I took doctor friends of mine out to lunch and picked their brains dry of info on the subjects and would boldly say that I am pretty much an expert on BFS and even ALS now ( I knew more than most of my doctor buddies did on these subjects)and trust me, there is a HUGE difference between the two symptoms of BFS and ALS and how they present themselves and function.

So now I dedicate my time in helping other's with fears of ALS and such. I was mostly on the AboutBFS.com web site, but it is down for now, so I am here now.

If only I could convince myself I don't have MS, I would be fine, but that is MY battle now and that is the next subject I am doing serious research on. It's the hardest of all because there is no one easy way to diagnose it and there are so many different possibilities of symptoms that one may or may not have and MRI's, spinal taps and so on are only part of the diagnosis, which could literally take years to finally conclude.

I have my own anxieties now about MS and need reassurance sometimes myself that I am OK. I like helping other's and if someone can be helped by what I know as facts, then that makes me happy. I have been through the severe anxiety where I couldn't even get out of bed, go to work, eat or sleep. I made out my will and prepared to die. It basically sucked for about a year until I really started learning that ALS is NOT like BFS and even the twitches are different and that's when I started being able to function as a human being again... along with my Ativan! Thanks again for the warm welcome. You are all a bunch of great people with great senses of humor... just like me!

Now I have a question for you: why are you worried about MS? :?:
Joe
 

ME TO...

Postby SCOTT on September 7th, 2002, 4:10 pm

LIKE YOU I HAVE BEEN HAVING FASCICULATIONS FOR SOME TIME ABOUT 6 MONTHS,MINE STARTED ALL OVER BUT ARE NOW 99% IN MY CALVES.
THEY ARE CONSTANT BUT DO HAVE TIMES THEY ARE MILDER BUT STILL PRESENT.
NO WEAKNESS AT ALL, WORKOUT WITH WEIGHTS, LEG PRESS 400LBS, RUN 3MILES EVERY OTHER DAY.
GOT EMG AND BLOOD WORK ALL FINE.
THIS WAS 2 OR SO MONTHS INTO TWITCHES.
ARRON ON THIS SITE IS GREAT.
MADE ME FEEL BETTER.I STILL THINK OF MS AND YOU SOUND LIKE YOU DO ALSO.
AFTER THE THAUGHT OF ALS NOTHING ELSE SEEMS SO SCARY.
THEY SAY NO WEAKNESS=NO ALS AND AFTER ALMOST 6 MONTHS I HOPE ENOUGH TIME HAS PAST FOR ME TO BE IN THE CLEAR.
WITH NORMAL EMG AND TIME WE ARE PROBABLY FINE?

BEST OF LUCK TO YOU
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Postby Arron on September 8th, 2002, 10:30 pm

Why am I afraid of MS? Why do some people get scared they have ALS when they've had clean EMG's? ALS is easy to rule out, MS is not and can take several years for it to "clinically" show-up on an MRI. I have "other" symptoms that some people with BFS don't have and that always brings MS to the back of my head... That's just me. As it says... I'm great at helping other's but when it comes to me... I'm a big baby. :-)
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Postby Joe on September 9th, 2002, 5:53 am

What sort of "other" symptoms do you have that people with BFS don't have?
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Postby Arron on September 10th, 2002, 10:49 am

tremors that really get strange sometimes, eye problems with occasional blurryness, rubbery legs that feel like I've had a few too many and an occasional hand or arm that "feels" like it doesn't want to do what I am telling it to do among other things. "Some" people with BFS have similar symptoms but we are far and few between. Also, I almost never get twitches in my calves, which is the #1 spot for BFS to be. MS is VERY hard to diagnose and can take years. I also have strange "crackly" sounds in my neck when I turn my head, like someone threw sand in my spinal cord area. It just keeps me wondering, that's all...
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Postby michelle on September 10th, 2002, 1:19 pm

Arron,

Not sure if you a frequenting the Braintalk board anymore, but I believe someone was asking for you recently. Deblyn I think? Anyway, I saw her post wasn't answered so I thought I'd let ya know. I'm assuming she was asking about you since you have helped people there as well (including me). :)

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Postby Airmade on September 10th, 2002, 1:48 pm

In my case the twitches started in the arch of my left foot and not in the calves.
Regarding the strange "crackly" sounds in your neck when you turn your head, thats very common and I don't think it is related to anything about MS or even BFS, my wife and my sister's necks crack more than mine, but they never had any symptoms like we BFSrs have (twitching, etc).
About the others symptoms what did your neuro say to you?
MS is a degenerative illness and shows up many other neurological signs! If your neuro told you are Ok and "just" you have BFS, then I think you have the same percentage of probability of the rest of the world to develop a neurological desease. (not so high as we are brought to think!) :wink:
Another important thing is that in all the deseases and conditions not all the simptoms are the same for all the suffers, there are some that are common to the most, but everyone then is differnt.

Hope this help our great helper!
:P
You should also try a glass of good Italian wine! :lol:
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Postby michelle on September 10th, 2002, 4:09 pm

Just wanted to chime in here and say, I too have the "crackly" sounds in the neck when I move it from side to side. Have had this for a long long time before the twitches. Usually in the morning when my body is stiff and tense!

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Postby Arron on September 10th, 2002, 11:11 pm

Michelle, thanks for letting me know but I don't post on Braintalk.org anymore. I got slammed for "chatting" with Deblyn about some old times we once had in common with our past lives "once upon a time ago" and it started a whole thread of bashing, so I quit that board. I still read threads but I won't post anything anymore.

As far as what my neuro said? What neuro? I never went to a neuro... I was told by both of my GP's (both good friends of mine) that I have benign twitching and to go home. I did have an MRI when I had some real strange head problems with a terrible sinus infection and it was clear except for some bone swelling in my sinus area. I just read a post by a guy on the Braintalk site that described Myoclonus, Myokamia and twitches. I have both. If I stand and bend my knees and put pressure on my thighs and legs, my outer thigh muscles ripple like little waves, that is not twitching at all and it isn't "tremors" it is myokamia, although I do have twitches and body jerks and really overactive reflexes too. That isn't just BFS it is a combo of a couple of things and it kind of worries me. I do have tremors at times to so who knows? The medical article I read about Myoclonic jolts, Myoclonus and Myokamia basically said it has nothing to do with "fasciculations" so I need to do some more research and make sure that isn't one of those articles that would make you believe that all twitches are a precurser to ALS, and we know that is wrong, so who knows? Maybe that article was wrong too... I want to know for sure. I am noticing more and more body jerks lately than twitches, so I am a little un-nerved myself right now. That's all just part of this whole thing I guess and why it is all still a mystery.
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Postby Guest on September 13th, 2002, 5:44 pm

Arron - I too am worried about MS, particularly after my former neurologist originally tried to diagnose me with demyelinating disease without having all (ANY) of the facts. My new neurologist now assures me that MS almost NEVER (way, way less than 1% of cases) presents with fasiculations but instead with other things such as numbness. Also, MS usually presents in one extremity and then goes away before presenting other places. There are some good books out there (as you probably well know) that dissect how common each symptom of MS is. Fasiculations are not even on the chart.

Your post first caught my eye because I felt I was having blurriness and double vision. I went to an eye doctor. Though this may sound hokey, he suggested I use eye-drops once an hour because of how much time I spend in front of the computer. It has seemed to help. (And based on the amount of time you spend helping others on this forum, my guess is that you may spend a lot of time in front of the computer as well.) :wink: Good luck! ~ Sarah
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Postby Debbs on September 13th, 2002, 8:42 pm

Just wondering if anyone else gets twitches in there face and jaw as I do, and also I have little electric like shocks in my legs from time to time and wonder if this is associated with bfs??
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Postby michelle on September 13th, 2002, 9:15 pm

Hi Debbs. I get twitches in my face and jaw all the time. It's very annoying, but I think most BFS'ers, at least from time to time, have them. I also get the electrical shock feelings as well. I've heard others with BFS claim this too. Hope this helps!

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Postby Debbs on September 15th, 2002, 4:38 am

Yes you certainly did help me Michelle, its certainly comforting to know that others have the same symptoms and can put your mind at ease. Im wondering if you or anyone else have twitches that are very fast, I can sometimes be standing upright feet flat on the ground and both my leg calf's are going for it soooo quick and strong, is this what your twitching is like?Its very unnerving (ha ha) I feel like a freak sometimes.I had a neuro exam 6 years ago, for a rapid eye movement and a leg that gave way on me, he found nothing except anxiety, he was looking for MS. His last words to me were...now if you start twitching let me know...and sure enough the next day I was twitching...lol..I had an MRI which was negative, been twitching on and off ever since :? I guess I just want to know that the type of twitching im having is related to bfs.

Cheers Deb
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bfs v. als

Postby sstine on September 15th, 2002, 7:38 am

i read what arron wrote about the difference between BFS twitches and ALS. Is it true that you usually don't see ALS twitches? My neuro told me when I got checked last week that if I had ALS he would see twitches all over. I hope you are right Arron. Please advise and thanks for everyone's feedback.
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Postby michelle on September 15th, 2002, 10:47 am

Hi Deb. Yep, I have fast twitches, slow twitches, thumping twitches.....any kind of twitch you can imagine, I have it. I've quit trying to analyze them. Sometimes people will say, if you have this kind of twitch then that's okay blah blah blah.....A twitch is a twitch. I feel like a freak too. Whenever I tell one of my friends I twitch all the time, they can't believe it. They think something must be terribly wrong!!! I wasn't twitching widespread until I read that twitching can be related to MND and I've been twitching widespread ever since. Makes you wonder......

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