Please help! The calf fascics get me so worried!!!!!

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Please help! The calf fascics get me so worried!!!!!

Postby scaredtom on September 19th, 2003, 10:13 am

Hi! Thanks in advance to all who read this and post a comment! A year ago in 9/02 I noticed calf fascics. That started my worry. The web took me to ALS and this site. I felt pretty sure it was BFS, but told my Dr. anyway.

Background: I have a history of anxiety re medical stuff. Have worried re my heart, my gut, etc, and have had thallium stress tests (I'm 53 now) and all have been fine. I have actually felt pains as a result of stress. There's been a ton of stress. Bought/sold house in 1998. mother-in-law died in 2000. Wife had *beep* affair in 2001-2002. Her father came to live with us in 2001 and he died in 8/02. Wife and I separated in 1/03. I have wonderful "girlfriend", but I still have lots of anxiety re separation, what people think, my church (catholic, and this is my second failed marriage). House is on the market and I'll be moving if/when it sells. Job is going great , but there's way too much to do and this is stressful. Bills are a challenge until the house is sold. LOTS OF STRESS.

The calves started with fascics in 9/02. I basically believed they were bfs until 8/03 and now my anxiety is really high. I took pravachol for 5 years, but stopped this on 8/25 per the Dr's orders to see is this is the cause. I also started Testim testosterone gel therapy on 8/11. I wonder if this could make the fascics more active???? My ck blood level (checked because of the pravachol) has been around 250 since 8/02. (I don't have earlier readings) Part of the reason for stopping the pravachol is to see what happens to the ck level. My eye started twitching around 8/25 - had a work presentation to give and a lot of stress at work) This stopped after 3 days. The calves twitch every night in bed (and I really mean fasciculations) I get fascics on other places of my body, but it's the calves into my feet that drive me nuts. I have no weakness, but do feel as if my calves are somewhat sore some of the time. I ride my road bike for exercise and have no problem with a 2 hour 25 mile ride. I also feel like I get fascics in my face - only the right side of my face kinda between my nose and eye. These fascics seem to be related to stress. I have ocassional fasics in my thighs and arms and other spots, but if the calves would just stop!!!!

Yeah, I worry about als. I know it's been a year, and I have no weakness, but I worry. I suppose I should get an emg. I'm even scared to call my Dr. and ask about it and a neurologist. I keep praying for the *beep* fasciculations to just stop!!!

Please comment!!! Any similar experiences??? I could really use the help! Thanks so much and be sure I will be praying for all of us!

Thanks again so very much!
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Postby dwl on September 19th, 2003, 10:40 am

Sounds like classic bfs. 1 year of twitching & no weakness would ber VERY unusual for als. You might want to see a neuro & discuss whether you need an emg for reassurance.

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update on my first post and "beeps"

Postby scaredtom on September 19th, 2003, 10:48 am

The first "beep" was a word that describes my wife having an affair witha woman. The second "beep" was simply "d*mn".

More thoughts on my symptoms. I rarely notice the fascics when I'm physically active. I usually have my legs at rest, like in the car, etc.

Again, thanks so much for any replies!!!

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Postby fastpage on September 20th, 2003, 9:06 am

If you read the old posts you will see that many have the same symptoms you do. I have the calf and foot fasics and the the face twitching. As I have said, I had nearly every test the neuro could think of and he says BFS. I also had elevated CPK and was taking Lipitor. I quit for 6 months but no real change. The neuro said to resume Lipitor if I wish. Sounds like your case is nearly identical to mine and many others.
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Postby Ray on September 20th, 2003, 9:24 am

I believe it's all body chemical related. My question is then why is it in both my lower limbs 24/7 and not anywhere else in my body at the same time??? Why both lower limbs which are different muscles, different nerve endings, ........, what is the common denominator here?

Any help would be greatly appreciated.

Thanks

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Postby garym on September 20th, 2003, 11:40 am

I too have the continuous calf fascics (both legs), and it is the primary area I twitch. It drives me crazy also, but I'm trying not to worry. One thing I've found that seems to help, is not to look at them. I know it sounds simple, and doesn't help much when you can feel them, but it has helped me. I've found the less i fixate on my legs, the better i feel. give it a try if you find yourself constantly looking at them. Another thing that has helped me sleep is placing a pillow between my legs in bed. This keeps my legs from touching so that i don't feel my legs twitching against each other. It has helped me.

Good luck, and try to relax.

Gary
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acupuncture can help

Postby nickic on September 21st, 2003, 4:03 am

I too twitch primarily in my calves. It is sooooooo annoying!!! and I notice them more when I am sitting or lying down.

One thing that has really helped me is acupuncture. I still twitch but I now no longer get the shuddering feeling in my legs and my back ache and other aches and pains are definitely better!!! Before the acupuncture I could hardly sleep and now I sleep like a log!!

Has anybody else out there gotton good results from acupuncture?

Anyway... try not to worry - you are ok!

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Postby Ray on September 21st, 2003, 6:55 am

I had jokingly said in another post that I've almost exhausted all avenues when it comes to finding an answer to eliminate my lower leg twitching and perhaps I should try acupuncture! Well, it's encouraging that it has provided you relief and maybe I too should give it a try.

I honestly believe that my constant pursuit for answers is also hampering my recovery. I or we, just need to come to grips that it's with us, acceptance is the key word, let it not rule our everyday thinking, take control and just maybe, I and you, will wake up one day and not notice the twitches. One good day will lead to another and so on and so on!!!!!
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How long have you suffered? AND an alternative to statins

Postby scaredtom on September 22nd, 2003, 12:52 pm

Hi Ray, Gary and others.... How long have you suffered? I wish I knew why it's just about totally in my calves. All I read says this is where it usually hits us. I know stress and anxiety are powerful. I keep wondering if tranquilizers would solve it, but I don't want to try. Been down that road years ago and got hooked on valium.

I do keep thinking and wondering that there must be some chemical imbalance or something that would solve it. How to find out is the key. I also ponder that I've just got to have some physical problem to key in on to focus all my anxiety into. For example, the cardiac stress test came back perfect in late July - early August. Now I can't worry about that so I had to replace it with the calf fascic. worry. Comments?? Similar experiences??

Finally, it's amazing that we're all going down the same paths. It helps, doesn't it?? For example, you guys have also stopped your statin drugs, at least temporarily, to check if that would solve the problem. After a month off pravachol, I see no improvement. But, ANYWAY, I have a good alternative to statins. My local catholic paper (The Catholic Review) had an article by a priest I highly trust about his cholesterol experience. He tried something for 3 months that brought his level way down and much improved. I bought it and am starting it and will let you know. Basically, it's omega-3 oil, etc taken in a highly purified form along with a red yeast rice extract. Both are know to be very helpful. Do a google search for RES-Q- 1250 and you'll find it under N3 Oceanic. It's expensive, but so are statins, and statins mess with your liver and are know to cause muscle pain and problems in some people. This is why WE'RE concerned about the statins!!

Hang in there. Maybe the fasics will stop one day just like they started!!!

Take care and have a great week!
Tom
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Postby jcavan4125 on September 22nd, 2003, 4:31 pm

Just for the record red rice yeast works exactly the same way as a statin because one of it's metabolites is a statin. So it can affect the liver just like a statin! If you are using red rice yeast, you should have your liver functions followed just the same as you would with a stain drug.
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Calf pain or awareness?

Postby scaredtom on September 24th, 2003, 9:17 am

Hi Guys,

More questions for all of you. Since my fascic. anxiety picked up a month ago, now I seem to have a mild pain in my calves when walking. They're not really sore to touch or massage, but it's as if they've been stretched too much or something - best way to describe how they feel. Of course, the fascics continue - and as most of us describe - primarily when they're at rest. This is in the car, or lieing in bed, or sitting at the pc. Sometimes I get a quick buzz kind of a fascic., but most of the time, it's just random little sub skin surface movement. Just about never any large muscle twitches.

My current question is to the "pain" I feel in my calves. Is this a bfs sensation? Do any of you feel this?? I think it also may be my somatization or simply my awareness and dwelling on my calves and worry about what's going on. It dominates my life sometimes and I hate it! Isn't it hard to let go??!!

It's so good to share this with other sufferers. Not many others can understand the intensity of our concern.

Thanks again!
Tom
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Postby nickic on September 25th, 2003, 2:25 am

I too get aches in my calves especially if I have been quite active the day before. It goes away though but normally starts somewhere else i.e my arms. Try and rest up a bit - don't overexert yourself, oh, the other thing is to rub an anti-inflammatory cream into your calves. Do you have Ibruprofen over there or Deep Heat? I think your equivalent is Tylenol?????

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calves

Postby SCOTT on September 25th, 2003, 10:43 am

most people with bfs twitch a lot in the calves...i have had it 24/7 for 18 months nonstop . have spoke to lots of people who have nonstop calves and no weakness and NO ALS...
it is much milder but still always there.
normal emg and 3 exams all is well , you show signs of only bfs.

no worries !!



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calves

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