hey

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hey

Postby Twitchman on September 5th, 2002, 2:59 am

hey people..i'm 21 years old and in july i became extremely stressed out and worried about some things. after about a week of constant worry, i woke up one day and went up my stairs and noticed that my claves felt kind of sore but they didn't hurt. it was more like halfway between sore and tense, i guess you could say the muscles felt kind of numb but i'm only saying that because i've heard the word "numb" used alot over the past couple months while researching my problems. after a few hours of doing normal things around the house, i sat down and put my feet up and noticed my calves were twitching in the same area they felt strange in. over the past couple months the twitching has spread all over my body..legs, arms, hands, feet, abs, back and even my butt. i still get the soreness feeling in my claves and sometimes in my biceps. i went in for an MRI on friday and i'm getting the results back tomorrow, i don't think it will give me any answers though. my doc wants to rule out MS but i don't really have the symptoms of it, i'm thinking ALS..i realize i'm young but it is possible for young people to get it. for a while i figured it was anxiety and stress because it did hit when i became stressed out but now i'm not stressed out anymore (maybe a little) but i'm still twitching and i don't see why my calves would feel strange if it was anxiety..and for this long. if the MRI is fine, i'll probably go on paxil and if that doesn't help, i'm probably going to be in for a long list of neuro appts...i'd twitch for the rest of my life if it would mean i didn't have ALS. what exactly does the "weakness" symptom mean? i guess the feeling i have could be considered a weak feeling but sometimes my calves feel fine and sometimes they don't. i don't know what the point of this thread really is but i'm getting sick of searching the internet for answers and talking to people who don't know how i feel...i'm just introducing myself i guess :lol:
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NO/ALS

Postby SCOTT on September 5th, 2002, 9:29 am

WEAKNESS IN ALS IS REAL... NOT ABLE TO DO SIMPLE TASKS.
FASCICULATIONS W/OUT WEAKNESS IS ALWAYS NOT ALS.
THE FASCICULATIONS CAUSED BY ALS ARE AFTER YOU HAVE THE DISEASE FOR AT LEAST 6-10 MONTHS THEY DO NOT COME FIRST.
SO W/OUT WEAKNESS IT IS VERY UNLIKLY YOU HAVE ALS.
SEND A NOTE TO ARRON, HE US THE BEST ABOUT MAKING SENCE ABOUT THE SUBJECT OF BFS

YOU ARE FINE
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Postby Dr. Jon on September 6th, 2002, 2:17 am

Twitchman, I know you say that you are not so anxious now, maybe not on a consious level but at the subconsious level it still continues on. I have had all the same feelings and thoughts you desribed, (including believing, (rather knowing) i was going to die a horible painful death.)How can you not when you are convinced there is even a possibility of having als. (you do NOT have als!).
Get whatever tests done that you need to be convinced that what you have is a case of benign fasiculations. Get some books to read on the power of the subconsious mind, as it may help. And if it doesnt thats ok too because the benign twitches are not harmful in any way. Also read some of arrons responses to others. He has not only researched this topic but also has a sincere desire to help all of us understand bfs and to put our minds at ease.
Thank you arron!
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Postby Arron on September 6th, 2002, 9:58 am

Twitchman, we have all been in your shoes. I literally lost an entire year of my life that would have been better spent sitting in some cold jail cell somewhere, at least with that, you don't have the raw fear of dying a long and horrible death.

Twitching in the calves is the #1 spot for BFS to start or continue to stay in, not saying that it always goes to the calves. I rarely ever get calf twitches at all as do many other's.

Numb is numb. Not a "feeling" but true numbness. Some people with BFS report numbness but not too often. What you are describing is not numbness at all. Numb limbs "can" be ( but certainly not always) a sign of MS. BFS has al sorts of symptoms from twitching, cramping, sore & achy muscles, Fatigue, "perceived" weakness (not REAL weakness),vibrations, tremors and shakes, cramps and a whole slew of other fun things. Fibromyalgia also has many similarities ands it has been said numerous times that they might actually be one in the same. Fibro has all kinds of symptoms as well, such as "brain fog", occasional blurred vision, twitches, fatigue, aches and pains, cramps, tremors and so on.

Keep in mind, perceived weakness fells like regular weakness but it isn't! When you can't get up off the floor, that is weakness. When you strain to hold your toothbrush, that is weakness. When your coffee cup becomes too heavy or you simply can't hold onto it anymore, that is weakness. When you can't walk up stairs, that is weakness. ALS weakness is PERMANENT. It does not appear one day and be gone the next. It is caused by disconnected nerves that control your muscles. Ojnce they disconnect, it is over. That muscle is no longer usable, period, end of story. It can not and will not come and go. Perceived weakness is a real feeling of weakness but you can still function. You might be draggin'ass that day but the next day (or a few days later) you are fine. That is ABSOLUTELY NOT ALS.

Your doctor probably ordered an MRI to rule out MS, which is fine but MS doesn't present itself with twitches alone. It usually presents itself with numb limbs (again, REAL numbness) temporary blindness, memory loss, tingly feelings and all sorts of little things like that. Twitches in MS usually come a lot later.

I would stay away from Paxil. It has been taboo for many people with horrid side effects. Ask your doctor about Ativan or Xanax. Those are two of the best, with Ativan being my personal favorite. it helps you relax without feeling like a zombie. It will help you sleep at night and it is very short term and only lasts about 4 hours so you can use it when you need it and it is gone when you don't need it. Things like Paxil take weeks to start working, they stay in your system for weeks and can have realy freaky side effects.

What you have described certainly doesn't sound like ALS to me. It certainly does sound like BFS or fybromyalgia.
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Postby charlene on September 6th, 2002, 6:50 pm

Arron I was glad that you mentioned Paxil. I agree 100% about staying away from it. My EX Neurologist had me try it to see if it helped. I was reluctant to because it is a medication that increases the signals in nerve endings. I thought that was the last thing I needed, but he was the doctor so I listened. After just one dose I ended up in the hospital because it caused seizures. So pleeeeze be careful what you take and become your own medical sluth... because even the doctors are inexperienced in dealing with this syndrome.
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Postby Twitchman on September 6th, 2002, 7:11 pm

thanks for all the replies, i'm glad this site is here so we can all talk about these things. i'm feeling better these days than i was a month ago..thanks again :D
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Postby michelle on September 6th, 2002, 9:32 pm

Just wanted to chime in here about the Paxil. I agree that it should be used with caution, or not used at all. I hesitantly took it for 6 weeks and it made me feel much worse. I started having myoclonic jerks many more times at night and even during the day. Once I stopped the myoclonic jerks during the day stopped, but I still get them at night. I've heard that Kava and SAMe (haven't tried either yet) are good anxiety herbals, but as with any herb or prescription there can be side effects so make sure you do the research!

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Postby JimK on September 8th, 2002, 1:12 am

My symptoms started almost 3 years ago. I was freaking out. My doctor prescribed Paxil & the next day my face went numb & that really freaked me out. I also had an all around strange feeling from it (buzzing in the head, numbness everywhere). I immediatley stopped Paxil & started on Ativan. That stuff saved my life. I was taking them twice a day, then only took one at night to relax & sleep. I was pretty dependent on it since I took them for close to 1 1/2 years, which is a long time for Ativan, but eventually stopped taking them all together. Great stuff, although I beleive it made me twitch more, but at least it helped keep me sane.
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Paxil

Postby mkjn on September 8th, 2002, 9:15 am

I too like so many I read about tried just about verything to rid myself of the Fasics and Paxil was one thing the Dr's had me try. STAY AWAY from that stuff. I gianed wieght, horrible nightmares and very strage feelings when you move your head. Very hard to get off of.
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Paxil

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