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ucla2004

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Hey everyone,


I am currently a third year medical student and I have been researching around on fasciculations since I happen to have them on and off. After doing extensive research, talking to ALS experts and people with ALS patients I have come to the conclusion that twitches are common in both healthy and ALS patients. However, benign twitches are extremely more common and alone, twitches are not a defining symptom of ALS. Twitches are very common, but it appears that most people do not have any complaints or not brought up in clinic because they are not physically disabiling by themselves. Matter of fact, most people are unaware of these twitches because they are subtle and do not cause any harm. In my immediate family everyone appears to be suffering from twitches. I can see my mother, younger 11 year brother, and aunt having benign twitches. Twitches itself are harmless, it is more the psychological part of it that makes it disabiling. I would like for everyone who has had experiences with twitches to pay careful attention: If anyone experiences twitches, then please try not to jump to any conclusions because it most likely benign.

This begs the question of why then do patients suffering ALS have twitches? Well, it is just happens that ALS patients also experience twitches, which makes perfect sense since ALS patients are not immune to twitches. It is true that most twitches in ALS is caused by denervation/reinervation, but science as yet to show why this happens. As of now I can only say that twitches are common in healthy individuals and patients suffering from ALS. Likewise, if someone experiences twitches it just happens that someone could come up with ALS because no one is immune to ALS. Let me give you an analogy. If I was to have a headache today should I start to believe that I have brain tumor. Of course not. Why? because headaches are extremely common and there are a plethora of reasons outside of a tumor that could explain the cause of my headaches. I hope this helps people who are suffering from twitches and think they have ALS. Please spare your time in something more useful such as contributing your time in helping finding a cure for ALS or volunteering in helping patients suffering from this condition. As for me I will continue working hard in med school and hopefully contribute in finding a cure of this condition.

Warm regards,
Rich
 

guwainengle

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How about when twitching/ fasciculations and cramping exist together?
 

ltr

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Thanks Rich, I think that we needed a post like that for several people on here. My problem with the twitches is that I was diagnosed with myopathy, biopsy said polymyositis, but the doc didn't really believe the polymyositis part. How do fasciculations fit in with that biopsy result, any ideas? I don't see how it could be coincidence that I have them as a benign symptom since they began after I became so ill, but maybe just irritation? Any thoughts are appreciated.
 

CindyM

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I have decided to ignore the fasciculations, the weakness, the fatigue and cramps and mouth and tongue tingling. I am waiting until I again get as weak as I was last summer, or until people cannot understand me. Then I will go back to the clinic. THis is what works for me, so thanks, Rich for the validation. Cindy
 

patricia1

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Cindy good for you I am like a happy morone LOL trying to ignore the symptoms But I am not going to spend precious time whinning and crying poor me obsessing on ALS and scared all the time there will be plenty of time for that. Pat
 

Jamiet

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Leslie,

Hello stranger, it seems we are all getting reaquianted here...is tha tgood or bad...


good to hear from you bud


take care

jamie
 

CindyM

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I once read a book by motivational Guru Brian Tracy, who says we become what we think about most of the time. Not that we can wish ALS on ourselves, or wish it gone. Some things are out of our control. :) But if we compare our health to what it was and focus on how bad we feel, how do you htink that will make us feel? :cry:

Or if we put the symptoms and worry aside and do all we can the best we can, we will be in a better place, emotionally. (This said from the woman who took a walk down a city block to see the sights on Saturday and is still wiped out today, Tuesday.) But the fasciculations and soreness and tiredness and cramping will not bother me so much if I focus on something else. Cindy
 

ltr

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Cindy and Pat - I know you two mean well, but everyone can't be the way you two describe yourselves. I am a single mother of three kids, one child who will lose his entire family. I am too ill to have enjoyable days with them. It is not called obsessing and it certainly isn't dwelling on illness......it is called declining.....progressing illness. There are days when I can not let my illness show as much as it does others, but we can't all go about our lives just saying, oh well, I'm dying and what will be will be! I think of that more as living in a pretend world and not doing all you can to fight. For me, and I think a lot of others on here, it isn't simply about being "wiped out", but it is complete illness and pain, yet still having little ones to care for and about. I hope you can understand that many of us don't want to just ignore our symptoms, but are still hopeful and have faith that we have an illness that can be treated. I don't think that is obsessing or whining or crying poor me, I think it is faith and hope and working toward an answer, working toward being there for our loved ones. And we can all pretend we're not scared, but I don't think there is one person who has written on this board who couldn't possibly be scared!

There are a few people who have had nothing but twitching and I think this thread is good for those people. Most of us, though, have the other symptoms that coincide with the twitching that can cause fear, a fear that is only natural to have.

Jamie - I'm glad to see you back too! I sure hope things turn around for you soon.
 

patricia1

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I have pain everyday cramps that distort my legs toes and fingers everyday causing severe pain. My arms cannot be moved without impinching a nerve that the pain is so severe that if it lasted more than a minute I would need morphine for the pain I cant speak without repeating myself because I have sluured speech My legs are weak I have no use of my arms My husband dresses me baths me cooks for me. I cant stand or walk long because of great fatigue. Please Dont tell me you are soooo sick so am I and others on this forum >I am saying you need to fight fight fight and smile and enjoy what little you have left Because,Its not going to last. I am focusing on living not dying or worring about whats coming. Maybe I am in denial. I wish you peace of mind Pat.
 

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CindyM said:
I once read a book by motivational Guru Brian Tracy, who says we become what we think about most of the time. Not that we can wish ALS on ourselves, or wish it gone. Some things are out of our control. :) But if we compare our health to what it was and focus on how bad we feel, how do you htink that will make us feel? :cry:

Or if we put the symptoms and worry aside and do all we can the best we can, we will be in a better place, emotionally. (This said from the woman who took a walk down a city block to see the sights on Saturday and is still wiped out today, Tuesday.) But the fasciculations and soreness and tiredness and cramping will not bother me so much if I focus on something else. Cindy


Cindy -

I agree. Self pity is not mandatory, even for those of us who have been diagnosed with a terminal disease. Politics aside, I find Elizabeth Edwards a particularly good example of someone who is getting on with the rest of her life despite being "incureable".

Liz
 

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I guess I would have more peace of mind if there were another adult in the house to help do those things for me and to leave my kids with. We all get peace of mind from different things. I definitely am having trouble finding it with this situation. But, thanks for the wish for it anyway!
 

ucla2004

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guwainengle said:
How about when twitching/ fasciculations and cramping exist together?

As mentioned before before twitches are fairly common, accompanied with cramps not as common but similarly plausible knowing that twitches are common in the population. I also get cramp-like feelings once in awhile. Whenever I am not doing anything and just lying in my bed I notice that I twitch 24/7. When I am extremely busy in clinic and not focusing on my body as much I do not notice my twitches. I think most of us are too focus on our body and notice every twitch the body throws at us. I know most people will say not to focus on our symptoms, but it is impossible to not focus on these symptoms because most of us these symptoms are experienced by ALS patients. I think one must try to find inner-peace however means. I notice weakness and cramping and twitches and tongue quivers but I choose not to focus on them. Who knows I might have the diagnosed of ALS along my years, but I choose not to focus on it as much. Chances are that I will die from something else and not ALS. There is a much great chance I will die from a car accident than die from ALS. I think out time should focus more on people who really need our services.
 

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Leslie- I'm sorry if I sound preachy when I talk about how I cope. I'll watch out for that. I wasn't talking to anybody in particular - just sharing what I am thinking. I can't post long histories of all my symptoms because then I frighten myself to death. When the ALS clinic said I will not get better and should prepare myself for getting worse I admit-I am reading something between those lines. If I don't minimize my symptoms, the fear of what may happen will paralyze me.

Now, suppose, just suppose, I get worse 6 months or 6 years from now. How would those who love me have wanted me to spend this time right now? What would I have wanted? What would any reasonable person recommend? The answers to these questions color my thoughts and plans. But I can't believe I am all that unique or unusual. There must be others who say, "what will be,will be."

BUT: one last thought. I am operating on the advice that the ALS doctor said it is Neuro-muscular. To me, that means "incurable." (Why else would he have said I will not get better?) So my peace of mind comes from acceptance. Others might have something curable and thus need a DX right away in order to start treatment. That makes all the difference, as far as I can see.
 

ucla2004

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ltr said:
Thanks Rich, I think that we needed a post like that for several people on here. My problem with the twitches is that I was diagnosed with myopathy, biopsy said polymyositis, but the doc didn't really believe the polymyositis part. How do fasciculations fit in with that biopsy result, any ideas? I don't see how it could be coincidence that I have them as a benign symptom since they began after I became so ill, but maybe just irritation? Any thoughts are appreciated.

If the biopsy should polymyositis than I think your GP should acknowledge that report and follow up with the pathologist for confirmation. Most times the pathology will have a correct Dx. May I ask why your GP does not believe it is poly? As I mentioned, twitches are common in our population. Do you notice twitches in just that area of the body group or generalized twitches. My mother has a constant twitch on her toe that has persisted for the last month. My mother thinks it is her anxiety that makes it worse. I am not saying your twitches are anxiety related, but it is possible due to an organic cause per say. Hopefully this helps. I have this abdominal twitch that has been going on for the last 3 months and boy it is annoying, but I am so busy that I do not notice unless I am lying in bed waiting for the next twitch to come. Hopefully this helps.
 

puzzled36

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Cindy, I can see what Leslie is saying. I think it is easier for you to find acceptance and a motto of 'whatever will be, will be" because your older, your children are grown and you have more support than she has. I feel more like Leslie, I also have three young children and I have worked my ass off for the life I have and I wont passively accept becoming paralyzed, losing my career, and leaving my husband and children. I agree to live life to the fullest everyday, but acceptance - no, not at 36. I'm damned angry and want my life back.
 
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