Having a major panic

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Having a major panic

Postby kazar on December 15th, 2003, 12:02 pm

I have posted a few times before and having been doing really well in trying to believe that I have bfs. I am now panicking big time. I have been twitching in my calves non stop for 9 months and I have lost a lot of weight steadily over this time. Some of this can be explained by the stress and not eating for periods when the fear has really taken hold, but I have really been trying to put it back on for a couple of months and nothing has happened. I am reverting back to obsessive behaviour like spending hours in front of a mirror, and trying on different clothes to see them hanging off me. I have even been tormenting myself by visiting MND sites, and I swore I would never do that again. Unsurprisingly I have been reading "horror stories" and my latest paranoia is some research that has linked a higher risk of deveoping ALS with having been struck by lightning or having had a nasty electric shock (I did 2 years ago). I know this might sound crazy, but I am petrified. My neurologist did basic clinical and blood tests and seems satisfied. I thought I was, but I am going out of my mind with worry.
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Postby sarahtonin on December 15th, 2003, 12:17 pm

Karen

Don't panic!!

As you've acknowledged, weight loss is related to stress and even though you think you're not your post shows that you are still in a state of high anxiety so no wonder you can't put the weight on. It took me about 2 months to start putting weight on again and now it's coming with a vengeance :roll:

I don't think you can put much relevance on the research you read - anyone can find a correlation with anything if they try hard enough. You are pretty unlikely to get struck by lightning, but much less likely to contract MND so to have both you'd have to be VERY UNLUCKY :)

Please try not to worry

Sarah
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Postby kazar on December 15th, 2003, 2:00 pm

Thanks for the advice, but as you know yourself, it's easier said than done. I am so tired of the constant fretting and thinking positively one minute and being in absolute despair the next. I can't afford to pay for an EMG, and I should trust my neurologist's diagnosis, but I keep thinking of the 6.7% fascics first symptom statistic and think it must be me (it has to be someone). Maybe I should get some anti depressants, just to give my head a rest. The irony is, that I have been seeing a counsellor since August, and I have been making real progress in all sorts of areas. It's just that panic about this seems to get in the way and holds me back. My counsellor thinks it could be my negative thoughts manifesting themselves differently. Thinking whether it is or isn't is just adds to the already exhausting process. Can you burn calories just by thinking? I was also wondering whether your metabolism might speed up with all the twitching going on. It's a crazy thought I know!!
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Postby jcavan4125 on December 15th, 2003, 4:58 pm

Hi Kazar,
Sorry to hear that you are so frazzled about this. I wonder if a second job might help in two ways. One it would give you less time to think about the twitching and two it would allow you to save up enough money to get an EMG and hopefully put your mind at ease! Good Luck!!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby sarahtonin on December 16th, 2003, 4:04 am

Funnily enough my therapist also believes the twitches are my stress manifesting itself physically because even though I am going through a lot of changes at the mo, I don't feel particularly stressed. It would make sense as twitches are an acknowledged symptom of anxiety, so if you have a lot of internal angst but don't release it emotionally your body rebels instead.

EMGs aren't cheap but I think you really should try and get one for your peace of mind. I think mine was about £250. Maybe you could ask someone to buy you it for Christmas :D

Sarah
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Postby kazar on December 16th, 2003, 7:25 am

I went to see my GP today to voice my concerns. He showed me the letter from my follow up consultation with my neurologist. It said that the clinical tests and blood work, including CK were all normal, and that he noted my worries about MND, but concluded that all was well. It helped to read it first hand, but I know that an EMG is the only thing that will put my mind at rest for certain. I'm having blood tests done for the weight loss (thyroid, blood sugars etc.,), but because of Xmas, I won't get the results for a couple of weeks. The problem when you are in this state of anxiety though is that waiting is the hardest thing to do.

Karen
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Postby Pole on December 16th, 2003, 9:18 am

Karen

I also thought that EMG would put my mind at rest for certain. I did it 7 months ago. EMG was normal. It helped for a week :) I'm still twitching (since April) and I'm still afraid of ALS despite I know that it's very unlikely that I have this disease.

regards
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Postby garym on December 16th, 2003, 11:13 pm

Karen,

Sorry to hear that you are having such a hard time. I've been there, and it really sucks! Try some relaxation techniques, I've found meditation helps.

Good luck, and try to let it go.

Gary
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Postby kazar on December 17th, 2003, 3:03 am

Just a quick good morning to everyone... I got an impromptu session with my counsellor last night to talk about this latest paranoia trip. We both agreed it was brought on by missing a train on Friday! I know this sounds weird, but it felt like the last straw in what has been the worst year I can remember. In itself it was a small thing, but it tipped me over the edge into a downward spiral of feeling out of control, and the fear about what the twitches could be, always takes top spot in the worrying stakes. I feel a bit better today, but who knows how long this will last.

Have a good day,

Karen
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Postby Twyla on December 19th, 2003, 4:01 pm

Karen, what Pole said about EMGs being reassuring only for a short while seems to be quite true, from all the reading I've done here and over at Braintalk. Not that I think you shouldn't have one, but I would definitely not count on it putting your mind at ease for very long, if you're like the rest of us here.

Let me tell you that I have done considerable reading about ALS and I don't think I've ever read where twitching in the calves was the first symptom. Definitely twitching can be a first symptom, in a very small percentage of cases, but from what I've read it's usually somewhere other than in the calf muscles.

And....this is important.....calf twitches are just SO common! You must know that from reading here.

I've had twitching calves, and feet, and occasionally other places, for almost two years now. Any time I look at me calves (with muscle relaxed) I can find twitches. So, I've done a ton of research on this and I'll pass along some of the quotes from various internet medical sites, and from medical textbooks that I have collected:

"Fasciculations occur at times in most normal individuals, and unless weakess is also present, they are seldom on any significance. Fasciculations are normal in incompletely relaxed muscles and are frequently observed at rest in the calves of normal individuals."

"Fasciculations may be seen under the skin as quivering of the muscle. Although fasciculations are typically benign (particularly when they occur in the calf), if widespread they can be associated with neuromuscular disease. "(http://www.emedicine.com/neuro/topic632.htm)

"Fasciculations, specially in the muscle in the instep of the foot and in the calf, are a normal phenomenon, occuring in the majority of normal individuals sporadically." - from Medhelp

"Fasciculations in the calves, and hands, do occur in many normal individuals. These can be chronic for many days, or weeks, even for years at a time without evidence of weakness, wasting, or evidence of disease. The twitching associated with low serum calcium is an example of another type of fascicular activity."

"Benign, nonpathologic fasciculations (not caused by disease or disorders)
· Often affect the eyelids, calf, or thumb
· Normal and quite common, often triggered by stress, anxiety.


I hope this will help you to relax a bit and enjoy the holiday season.

Twyla
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Postby kazar on December 19th, 2003, 6:16 pm

Twyla

Thank you so much for your post. It was very reassuring, but you know what it's like, how long will it last? I keep re reading posts specifically about "calf twitches" to try to put my mind at rest. Sometimes it works. I do have twitches elsewhere, but much less frequent. In fact, shortly after I noticed the calf twitches, the area across my nose twitched frequently for about a week. The week after that my tongue twitched sporadically for about a week (which freaked me out, given what I had read..), and my lip, arm and thigh felt like they had a buzzer going off for a few seconds at a time on and off, again for a week or so. Ever since Mar/Apr, I have noticed the odd thumper or a few twitches that last for a few minutes in most areas of my body. It's just that it's never ending in my calves.
I agree with you about the EMG. For a start, it's expensive to do this in Britain if a neurologist won't do it on the NHS, and I'm not sure it would alleviate my fears anyway. I kind of hold on to the feeling that the neuro would have suggested it if he thought my symptoms warranted it. I know that elevated cpk levels can be suggestive either of something sinister or benign, but the fact that mine were ok is the one positive I'm clinging onto at the moment. My therapist has suggested me seeing a psychiatrist with a view to medication for the anxiety, which I will do in the new year.
I am so pleased that I found this site. My first mistake was looking up twitches on the internet, but at least I also found you all as well!

Happy holidays..


Karen
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Postby Twyla on December 19th, 2003, 11:52 pm

Karen, when all this started for me I had just about everything you mentioned, except tongue twitches. There was twitching around my lips, and chin, thumpers on my upper arm, buzzing (really strong) in my feet and thigh, which, like yours, were on for a second or two, then off for a couple of seconds, very rhythmic, and very annoying. I also felt twitches from time to time in my abdomen, derriere, eyelids, hands, and feet.

After a couple of months, when I started to feel less worried that I had some dread disease, most of this stuff pretty well stopped....except the calf twitches, which continue, but not as strong. I used to be able to feel them frequently, like popcorn popping, but now that rarely happens even though I can always see them there, every few seconds or so.....especially after I've been on my feet for awhile. They are much less frequent after I have been resting....are yours like that?

All this started for me after a period of unusual anxiety, and very little sleep at night. I"m convinced that stress and anxiety play a major role. The cause of my anxiety resolved long before the twitching and buzzing stopped, tho. I guess it just takes time for our bodies to settle down and get back to normal.

What helped me most was reading on this forum, and on Braintalk, the many stories written by others who had essentially the same symptoms as I was experiencing, and had not gone on to develop any disease. So I hope you'll soon come to realize that your symptoms are shared by many and are nothing to be overly concerned about. But I expect that you, like the rest of us, will just need "tincture of time" to put your mind at ease.

Twyla

Btw, I also read a quote by a psychiatrist...."Buzzing is a classic symtpom of anxiety."
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Postby kazar on December 20th, 2003, 5:21 am

Twyla, my calf twitches appear to be very similar to yours. They are always there, but definately less intensive when I first wake up and am rested (in theory!). They seem to be more intense at the moment which is hardly surprising given the facts that I am focusing on them and my anxiety levels are sky high.
If I thought twitching was my only symptom I could possibly believe that I am worrying out of hand. It's just that I can't seem to put lost weight back on, and my thighs are noticably thinner (so of course I assume muscle atrophy). As I have mentioned in previous posts, my feet have felt different when walking barefoot for a month or so. I thought this was due to fallen arches, but my doctor says I haven't got flat feet, so now I think I must be imagining it which does nothing for my sanity. I definately have no obvious signs of weakness, ( I can walk on toes, heels etc), and the neuro did all the strength and reflex stuff on two occasions.
I wish there was a way to hold on to my positive reasoning rather than falling into the trap of thinking the worst and spiralling out of control.

Karen
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Postby Ray on December 20th, 2003, 9:43 am

Wow Twyla, your experience is exactly the same as mine with one exception, I used to get tremors in my legs but now I'm on an anti anxiety medication and the tremors are now gone. Karen, I can not say this enough, anxiety can have such a grip on your mind that many of your thoughts and sensations are a result of anxiety alone, as soon as you resolve your anxiety you will notice a tremendous improvement in your condition. Many people here take medication, they meditate, hobbies, ........ to help remove those negative thoughts which is the foundation of all anxiety. I feel comfortable knowing that my twitches are benign but it still does not stop me from finding a cure or a solution to minimize the twitching. My psychologist taught me a game, whenever the twitches were noticable try and make them last as long as possible (will them on), because you are now treating this as a game and playing games is associated with fun you will learn to put your mind at ease. This takes some hard work but eventually I learned to relax about the whole thing. One other thing he taught me and this is a cognitive behaviour thought process, keep repeating the following statement over and over, everyday for weeks until it is engrained in your brain and the thought will come naturally:

Revised thought regarding leg twitches

" This is a meaningless, harmless sensation that has no meaningful cause and that signifies nothing. As such, I can let go of any agenda to control or get rid of it and get on with doing whatever I am doing right now. "

" This is a meaningless, harmless sensation that has no meaningful cause and that signifies nothing. As such, I can let go of any agenda to control or get rid of it and get on with doing whatever I am doing right now. "

I hope you take the time especially over the holidays (I ruined my last christmas because I was sooooo caught up in this C R A P) to relax your mind have fun and just enjoy. I bet in the new year your posts will be supportive of others and not necessarily on yourself. You can do it!!!

Wishing everyone a great holiday season!

Ray
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Postby mstwitch on December 20th, 2003, 10:14 am

Ray, Thank you for your uplifting reply!! May you also enjoy the holidays with friends, family, love and peace.
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