View Full Version : Most twitches are benign...I can assure anyone
ucla2004
08-13-2007, 09:56 PM
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
08-14-2007, 06:05 AM
How about when twitching/ fasciculations and cramping exist together?
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
08-14-2007, 09:19 AM
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
08-14-2007, 10:12 AM
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
08-14-2007, 10:23 AM
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
08-14-2007, 10:28 AM
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 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
08-14-2007, 12:24 PM
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.
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
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
08-14-2007, 07:24 PM
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 dx 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.
CindyM
08-14-2007, 07:46 PM
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
08-14-2007, 07:49 PM
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
08-14-2007, 08:13 PM
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.
Hi Rich - it was the neuromuscular doc who didn't believe the poly dx, but has started me on Prednisone for what she called mild myopathy. She said she didn't believe the poly part because most patient's she see's with it are using assistive devices and don't pass the neuro strength exam as well. I don't know what to think of that, except that in all my research I have found that not all patient's present as typical. The NIH also doesn't agree with the dx because of the twitching. It seems twitching could happen with inflammation, but I'm not the doc! Anyway, my twitches are generalized, but also I have had them in some places constantly, like bicep, buttock, abdomen. My jaw feels rather weak and had some twitching, but only for the one day. Maybe the twitches are really from the underlying cause of the myopathy, like if a virus caused it. The rheumo called today and said if I didn't start to improve in the next two weeks she was beginning the chemotherapy drug used for this, I think Methotrexate. Thanks for your post, it helps!
Thanks Annmarie....I don't know what I would do without you taking my sobbing phone call and listening to my fears. You and your family have lifted my spirits, just knowing there are people like you.
ucla2004
08-14-2007, 10:16 PM
Hi Rich - it was the neuromuscular doc who didn't believe the poly dx, but has started me on Prednisone for what she called mild myopathy. She said she didn't believe the poly part because most patient's she see's with it are using assistive devices and don't pass the neuro strength exam as well. I don't know what to think of that, except that in all my research I have found that not all patient's present as typical. The NIH also doesn't agree with the dx because of the twitching. It seems twitching could happen with inflammation, but I'm not the doc! Anyway, my twitches are generalized, but also I have had them in some places constantly, like bicep, buttock, abdomen. My jaw feels rather weak and had some twitching, but only for the one day. Maybe the twitches are really from the underlying cause of the myopathy, like if a virus caused it. The rheumo called today and said if I didn't start to improve in the next two weeks she was beginning the chemotherapy drug used for this, I think Methotrexate. Thanks for your post, it helps!
What do you mean constantly? I also have them constantly in those areas as well. They come and go but I have seen them in the last 3 months non-stop. I really believe these twitches are non-related to your condition and should not disregard polymyositis as part of your dr. differential. For example, let me give you an analogy. If I am working up a case for a suspicion of MS and see all the symptoms related to this condition (pins and needle, ocular blindness, tingling, incontinence), should I disregard MS because this patient suffers from twitches? Of course not because it could just be plausible that hat this patient just happens to have MS with twitches. you see my logic. Twitches are just too common to disregard a disease simply because someone complains of twitches. Hope this helps.
It does help. You certainly have a point, it may be quite a coincidence, but the twitching may just be that. When I say constantly, I mean that those places mentioned twitch quite often. I notice those places when I am not active, but that does not mean they are not twitching when I am active. I think the abdominal area bothers me the most because I am so weak in that area, can't sit up straight. I haven't had a second opinion and maybe I should get that just for some more input, since my neuro is treating me with steroids. Thanks alot for you replies.
Jamiet
08-15-2007, 03:19 PM
We all have a bad situation, and each one has it's good and bad points. I think of you alot leslie, it's got to be double hard on your own. I have to admit, if it were just me and the kids, i just don't know how i would do it, i don't know.
pat and cindy and the rest of you are wonderful, we're all in here supporting one another, trying to lift each others spirits, as hard as it may be.
I wish a miracle would happen, we would all wake up tomorrow and feel GREAT. I bet all of you in here, just wish we coudl have that feeling back for just a few days.
patricia1
08-15-2007, 03:51 PM
I was thinking if we all listed 1-10 our symptoms the first to the present,maybe that would help to compare. Instead of a long tread just a list Than we can compare Pat
1 Lump in throat
2tingling in head
3 rash
4slurred speech
5rapid heartbeat
6ARm weakness
7leg fatigue
8arm arthropy
9weight loss
10extreme fatigue
11 choking on water or combination foods
I really appreciate everyone's help. I think what we are all most worried about is leaving family behind- especially children. My daughter is so wonderful- sweet and smiley and I would not want anything to take that away from her. I am so scared that something will. If I did not have anyone who I know would be here for her I would cry every minute of every day.
As for the symptoms- I think all of us have twitching, some sort of bulbar issues (tongue twitching, slurred speech, scalloped tongue, and/or trouble swallowing.). I do not have weakness but I am begining to think I have atrophy- I have these little dents in my skin where there were not ones before (But I am also losing weight after pregnancy and my body is changing- and I understand that)
As for the neuros- I had blood work done at one over a month ago and they have yet to get me the results. They never call back, so I am assuming they are normal- but what if they are not and this could all be cured. I had an emg on my legs and everything was clear- no abnormailities so he will not really talk to me anymore- and also blames anxiety. It is sort of a catch 22 - the anxiety is being caused by the fact that I am not feeling well and I need your help to tell me why.
I do pray that we all get better!
Lorie
08-15-2007, 06:36 PM
Muscle twitching
Definition:
Muscle twitches are fine movements of a small area of muscle.
Alternative Names:
Muscle fasciculation; Fasciculations of muscle
Considerations:
Muscle twitching is the result of minor local muscle contractions or the uncontrollable twitching of a single muscle group served by a single motor nerve fiber or filament.
Muscle twitches are minor and often go unnoticed. Some are common and normal, while others indicate a neurologic disorder.
Common Causes:
Benign twitches (not caused by disease or disorders)
Often affecting the eyelids, calf, or thumb
Normal and quite common, often triggered by stress or anxiety
A diet deficiency
Drug overdose (caffeine)
Drug side effect (such as diuretics, corticosteroids and estrogens)
Exercise
Symptoms suggestive of a neurological cause of fasciculations include:
Wasting of muscle
Weakness
Other findings of nerve dysfunction
Neurological illnesses where fasciculations are seen include:
Chronic denervation of muscle due to disc compression of nerve exiting the spinal cord
ALS (Lou Gehrig's disease)
Spinal muscular atrophy
Muscular dystrophy
Myopathy
Lorie
08-15-2007, 06:59 PM
ALS
Initial Symptoms of the Disease-ALS
At the onset of ALS the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:
muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing
twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
impairment of the use of the arms and legs
"thick speech" and difficulty in projecting the voice
in more advanced stages, shortness of breath, difficulty in breathing and swallowing
After Tim having The Twitching and Cramping for seven years before dx. I don't take the Twitching so lightly. Along with the Cramping. I see Tim's Twitching and my own. The look the same. 1-/12" years for me. Who knows whats down the road.
I went to my M.D. this morning to get the blood work test done that the Specialist that studies Underlying Neuromuscular Disorders said I needed. He said I didn't need a Neuro. He had sent them to my Neuro. I had them sent to mine and Tim's M.D.
She is great. She knows Tim's history and mine. When I went in this morning, not only did she have those test done. She threw in several others. She knows something is up!
Especially since it took seven years to get dx for Tim. I hope its just a big coincidence. I am not worrying about it. I told my husband if these test come back negative like all Tim's did in the beginning. I was not going back to Doctor's, except for my ear disease. Unless it gets drastically worse. l will keep seeing her. She will stay on top of it, for sure!
I have regular cramping/twitching and some nights I wake up in Cramp agony in my legs, I hurt so bad I scream. I wake my husband a daughter up from it. It's crazy! I even take Med. for it before I go to bed.
I just don't anymore folks! We will see how these test come back???
I will keep you tuned in.
Lorie:-D
CindyM
08-15-2007, 07:05 PM
Annmarie- I don't see anything wrong with asking for a prescription to help with anxiety. Anybody with a lot on their plate should get some relief now and then.
Pat- my symptoms started like this:
pain and cramping in hands
weakness in hands
numbness in hands
weakness in legs
exaustion after any mild activity. This lasts into several days now.
inability to climb stairs most of the time
twitching like worms under skin
inability to jump or hop most of the time
pain and cramping in legs and feet
drooling at night and sometimes the day
sometimes words sound slurred if I am tired
tripping and occasional foot drop/occasional eyes don't open on first couple of tries in the morning
tingling in face and tongue - mouth twists all up when I try to relax
My new theory is that maybe there is a new type of autoimmune disease that some of us have. Or maybe, since we are all healthier than in past generations, it takes longer for the MND to ramp up.
It's a thought...Cindy
Lorie
08-15-2007, 07:11 PM
I am on Paxil to keep from Depression. Now I need something for my nerves. There about shot! Somehow I keep it together and keep going!
Lorie
CindyM
08-15-2007, 07:28 PM
Gee, Lorie-I always figured what keeps you going is you found a positive channel for your nerves and anxiety. Somebody once told me you can't hold two thoughts at once in your mind. So maybe being an advocate for ALS awareness keeps your mind off your troubles? I bet Mike's paintings do that for him! What do you say, Mike?
Lorie
08-15-2007, 07:51 PM
I think you are right! If it wasn't for giving and caring so much I probably would graduate to the "Nut" house. ALS Advocate it is! My Brothers tell me we need to cut me into fourths. I am everywhere and in to so many things! I better not slow down.
Thanks Cindy,
Lorie:-D
Pat - I started like this:
1. Rapid heartbeat, up to 155 beats per minute
2. Tingling on right side, even head
3. "Electrical" feeling in head/light-headedness
4. Tremors
5. Vibrations
6. Extreme fatigue/exhaustion
7. Weakness, mostly legs, now moved on to trunk, arms, neck. Have to "lift" right leg to walk
8. Fasciculations
9. Mild cramping
10. Lump in throat/hoarseness/cramp in throat
The first four symptoms were the beginning and have subsided except for occasional paresthesia (tingling) still on the right side of my head. The weird thing is that some days I can hardly hold my arms up to drive, but other days I can, yet I feel progression.
Cindy - I also have to try a few times to open my eyes some mornings. This scared me the first couple of times it happened.
My symptoms are as follows:
1. tremors (about 5 years ago-diagnosed as essential tremor)
2. One year later, jaw tremor (usually a sign of Parkinson's disease)
3. Stiff back or neck (had this many months before the symptoms below developed)
4. muscle fatigue (had this for years)
5. Weakness right arm (this year in March, approximately)
6. fasciculations-started as diffuse, now both diffuse and localized (constant)-I also had fasciculations many years ago, perhaps 10-15, but with no accompanying weakness
7. atrophy in arms? I may have had this one year before muscle weakness, however
8. biting tongue when I eat, even when I speak
9. noticed tongue atrophy (may have been there before, however), also a sensation that there is something in the back of my throat when I swallow
10. slurred speech
all during this time, I have also experienced fatigue
By the way, Leslie, I can empathize with you as I live alone and have no one else to rely on, if and when I start to deteriorate further. The majority of those that post here appear to be married. Thankfully, they have their spouses to look after them. What about those of us who are alone? Yet, another fear to confront.
annmarie and Leslie:
I am very grateful for your concerns on my behalf. It is supremely comforting to know that there are others who truly understand my situation because they are dealing with similar issues.
Yes, I am in the process of preparing for the upcoming semester. In addition to on-campus classes, I also teach many sections on the internet.
Here are mine
1) the tinglng that felt like it was inside my head (October of last year- has since gone away)
2) pain upon urination (started 7 months ago)
3) eye twitch (went away- returns every now and then)
4)muscle twitches all over- mostly concentrated in my knees (come and go)
5) lump in throat- at night it is difficult to swallow
6) sometimes slurring words (no one else seems to notice- although today I said "calorie" instead of "gallery"
7) sometimes hoarse voice
guwainengle
08-21-2007, 06:10 PM
Does anyone know why people have the feeling of a lump in the throat? I have had that feeling for a long time-- even had my esophagus dialated 2 times-- How does that relate to ALS and why does it happen?
G
patricia1
08-21-2007, 08:22 PM
That was my first symptom lasted about a year pat
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 dx 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.
I've had upper motor neuron symptoms that started about 10-12 months ago (spasticity, weird gait, pain, muscle fatigue/trouble walking or standing for more than a few minutes, clonus, brisk reflexes initially just knee then arm, then hoffmans/tremnor, then jaw, some weakness on my left side). No twitches until about 6 months ago. Now they're pretty frequent & everywhere. At least one small twinge like twitch every 1-2 minutes & at least 10 large prolonged twitches an hour. Two ALS clinics have confirmed upper motor neuron disease, both docs seemed a little suprised when they observed the twitches, but EMGs have been normal. Any thoughts on twitches that develop along with UMN signs with normal EMGs? Biopsy had shown past denervation/reinneravation, large fiber type grouping, some polygonal atrophic fibers. No visual atrophy though & I just had a very thorough EMG that was completely normal. Seems weird to me.
Thanks!
-Rob
edna may
08-21-2007, 08:42 PM
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!
ltr I feel for you,, a single mother trying to raise children is a difficult task at best of times . But trying to do it when you are feeling lousy, & worrying what will happen to them if you get worse. I can't begin to imagined how it must be . I am an old women & I have had a good life & can afford to be nonchalant &.carefree. You have my deepest sympathy for your situation. if you need a shoulder to cry on I'm your gal.. EM
Sammantha
08-21-2007, 10:11 PM
Right on puzzled36!!!!!! Itr, polyomyositis mimics als because it can cause muscle wasting also. When muscles waste they are going to twitch..... Did you ever get a EMG after your diagnosis of it?? I read that EMG can support the diagnosis and biopsy confirms it... The wasting is just at a slower rate, and gets worse when you are sick, stressed or working too hard??? Look up EMedicine about your condition.... I have taken on Cindy's point of view but deep down i feel like puzzled36 and this is the only place i can say that....... Most people are having a hard time dealing with a normal life let alone one with a illness, they do not want to hear complaining, questions etc about something that totally makes what they are going through seem trivial.....
This post got totally off subject, UCLA wanted to let people with twitches and twitches only do not mean ALS, and i think if you just have twitches and have looked up conditions associated and thought ALS, then you may have a problem that stems from your mind or emotions. I first looked up muscle atrophy, that lead me to twitching and cramping... I had severe charlie horse cramps for a year then it subsided and i thought nothing of it. Then where i had that i had twitching, thought nothing of it. Then i started having muscle atrophy in that area and realized that all those things matched together. Oh and a word of advice,,,,,,,,,,,, do not go to quacks for alternative therapy, i recently went to one who told me to tell my subconscious that i was okay, and after an hour of different sayings he asked if i felt better... I said no, and he suggested that i wanted to be sick and i almost decked the guy........ I worked hard to become what i am, i have aspirations that i cannot fullfill because my body wont let me, i never ever would WANT to be sick....... Come to find out this guy was a high school teacher who got into metaphysical stuff and had lots of girlfriends that found him so ENLIGHTENING!!
mamaoftwo
08-21-2007, 10:22 PM
Sammantha - your post made me laugh. Thanks! I have been there with the alternative therapy thing. I went to a reflexologist (just for relaxation to be honest) but he told me that I had a ton of negative energy around me and that he wanted to do reiki healing on me, or some other kind of energy healing. He waved crystals and tuning forks over me (no I am not kidding!) and wafted some kind of lit up herb around the room (which did nothing but remind me of my student days!!). He told me that I should go home, light some basil and walk around my home with it to purge the house of negative energy fields. Believe it or not, as desperate as I felt that day, I did it. My neighbors thought I was smoking pot. I look back and laugh my head off about that now. Desperate times, desperate measures!!!
Rob,
wow that is odd, I myself have never heard of that, I have those same symptoms exactly, and also atrophy, I had a slightly abnormal emg, and will have another Monday which I expect to be very abnormal. I also have tongue twitching, and esophagal spasms and deep breathing problems.. The esoph problems started first. Clean emg, could it be a spinal cord problem? I hate the clonus and spasicity, I can only stand for a couple of minutes at a time, whenever people are standing around talking, I have to find the nearest chair, and the stiffness is another fun thing, really have that.
Hi Annmarie,
I've had normal spinal MRIs. I'm not sure about atrophy.. I've lost 15-20lbs since April but also stopped drinking beer (2-3 a day) and quit dairy. My biopsy in december had shown some atrophy, but if I do have atrophy it's very slight and not obvious or quick progressing. Others on the PLS forum have fasciculations too but they seem to be more localized & less frequent. Mine are everywhere - arms, legs, hands, stomach, chest butt, sometimes face.
How significant is your atrophy? Isn't it weird to have atrophy with just a slightly abnormal EMG?
Thanks!
-Rob
Annmarie,
Yes I had spinal tap.. negative for MS (just slightly elevated protein (47 vs high end of normal being 45 - but this is nonspecific), brain & spine MRIs showed no lesions. Neuro said if it had been MS lesions would have shown given the level of spasticity.
My next EMG is mid Sep & neuro appt end of Sep.. we'll see!
ltr I feel for you,, a single mother trying to raise children is a difficult task at best of times . But trying to do it when you are feeling lousy, & worrying what will happen to them if you get worse. I can't begin to imagined how it must be . I am an old women & I have had a good life & can afford to be nonchalant &.carefree. You have my deepest sympathy for your situation. if you need a shoulder to cry on I'm your gal.. EM
Edna May - thanks for understanding how I feel. Just when a person thinks they have been through it all, the worst happens. I know I have to get a grip and get our lives figured out before anything more happens. I just wish I knew how or where to start. The worrying definitely makes me feel worse.
Sam - my two EMG's have been clean, but one was the first week of symptoms and the other was one needle stick and mostly nerve conduction. No myopathy was seen. Polymyositis was noted on biopsy, but the doc said she didn't think i had that, only mild myopathy. She said most polymyositis patients can't walk and are sicker than me. I think she was rotten for saying that because she has no idea how bad it is for me and I don't think I should wait until things are as bad as she wants before she takes me seriously. My rheumo said that she was wrong about her assumption because my rheumo has several polymyo patients who walk the same as me!! All the neuros have made it clear that fasciculations DO NOT happen with myopathy or polymyositis because there is no nerve loss, only muscle. The fasciculations are supposedly caused from misfiring of the nerve to the muscle, which doesn't happen with myopathy or polymyositis. This, and the fact that the treatment for polymyositis isn't working and I have progressed immensely, is the reason I am terrified.
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