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scared to death that I may have ALS

I am so afraid that I may have slow onset ALS.  I really would appreciate anyone's response, because I am feeling very lonely about my undiagnosed symptoms.  I have been to a Neurologist that did a sleep deprived EEG and a MRI (which was looking for MS) and both came back normal.  Here is my story:  5 1/2 years ago I had a flu shot and two days later I began experiencing twitching all over (in every possible muscle imaginable constantly all day). I also had a vibration feeing in body and I had myclonic jerks at night that kept me awake most all of the night.  This lasted for about 3 weeks and went away.  I didn't have any problems except occasional twitches until two years later.  This bout of symptoms included the muscle twitches, vibrations, problems sleeping, but this time my right leg felt very heavy and weak but I could walk.  Again, my problems went away until recently.  Now my symptoms are even more concerning.  I am having muscle twitches, mainly in my right leg but in my left leg also, vibration feeling in body, and the most concerning thing is my right leg feels very weak.  When walking up or down stairs, my leg is shaky, and I am also having shooting pains in my right leg.  On top of all this, my neck has started  hurting for no reason and I am worried that all of this could be ALS related.  Has anyone seen a progression like this?  Thanks so much for your response I am so depressed and it is causing problems in my marriage.
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Avatar universal
I'm looking for a GOOD Naturopath in the area between San Francisco and San Jose.  Can anyone help me?
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Avatar universal
I'm writing to address your symptoms and offer a possible answer.  For the past year I've had twitching in my left calf and it progressed to both calves, then a few twitches here & there on my body and then a few twitches on my face, cheek and mouth area.  This fall I started aching in my thighs, other large muscle groups, and having muscle fatigue.  I was quite concerned as my father died of ALS.  I talked to my med. dr. about it and he scheduled me for MRI.  However, ALS is difficult to diagnose so I'm not relying at all on MRI results.  IN THE MEANTIME, I visited my Nathuropathic "dr.".  She specifically tested my nervous system.  My myelin sheath tested strong.  (The myelin sheath covers the nerves.  In ALS patients, the myelin sheath dies.)  My neurotransmiters tested strong.  However, my MODULAR-TRANSMITTER (it's a substance which the transports the neurotransmitters) was shorting out which would cause twitches which causes muscle fatigue which causes aching which causes a lot of worrying!  She told me to take 2 tsp. of Nature's Sunshine flax seed oil daily.  I bought a bottle of Barleans (high quality store flax seed oil), but had to take 3 tbsp. of it.  By the second day the twitches diminished by approx. 60%.  I was amazed after having coped with these symptoms for over a year.  I then ordered Nature's Sunshine flax seed oil and began taking 2 tsp. daily.  The twitches have decreased by approx. This fall I started aching in my thighs, other large muscle groups, and having muscle fatigue.  I was quite concerned as my father died of ALS.  I talked to my med. dr. about it and he scheduled me for MRI.  However, ALS is difficult to diagnose so I'm not relying at all on MRI results.  IN THE MEANTIME, I visited my Nathuropathic "dr.".  She specifically tested my nervous system.  My myelin sheath tested strong.  (The myelin sheath covers the nerves.  In ALS patients, the myelin sheath dies.)  My neurotransmiters tested strong.  However, my MODULAR-TRANSMITTER (it's a substance which the transports the neurotransmitters) was shorting out which would cause twitches which causes muscle fatigue which causes aching which causes a lot of worrying!  She told me to take 2 tsp. of Nature's Sunshine flax seed oil daily.  I bought a bottle of Barleans (high quality store flax seed oil), but had to take 3 tbsp. of it.  By the second day the twitches diminished by approx. 60%.  I was amazed after having coped with these symptoms for over a year.  I then ordered Nature's Sunshine flax seed oil and began taking 2 tsp. daily.  The twitches have decreased by approx. 98% and the aching in my muscles is improving significantly and I feel stronger.  I'm not saying this remedy will fix your symptoms, but it might be worth a try.  My suggestion is for you to find a good Naturopath ask to have your nervous system muscle tested.  My neuropath had to get quite specific (in fact, when my neuromodulator tested weak, she didn't even know what the neuromodulator is) with the muscle testing to find out what was going on in my case.  Feel free to write back if you want further info.
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Avatar universal
I'm writing to address your symptoms and offer a possible answer.  For the past year I've had twitching in my left calf and it progressed to both calves, then a few twitches here & there on my body and then a few twitches on my face, cheek and mouth area.  This fall I started aching in my thighs, other large muscle groups, and having muscle fatigue.  I was quite concerned as my father died of ALS.  I talked to my med. dr. about it and he scheduled me for MRI.  However, ALS is difficult to diagnose so I'm not relying at all on MRI results.  IN THE MEANTIME, I visited my Nathuropathic "dr.".  She specifically tested my nervous system.  My myelin sheath tested strong.  (The myelin sheath covers the nerves.  In ALS patients, the myelin sheath dies.)  My neurotransmiters tested strong.  However, my MODULAR-TRANSMITTER (it's a substance which the transports the neurotransmitters) was shorting out which would cause twitches which causes muscle fatigue which causes aching which causes a lot of worrying!  She told me to take 2 tsp. of Nature's Sunshine flax seed oil daily.  I bought a bottle of Barleans (high quality store flax seed oil), but had to take 3 tbsp. of it.  By the second day the twitches diminished by approx. 60%.  I was amazed after having coped with these symptoms for over a year.  I then ordered Nature's Sunshine flax seed oil and began taking 2 tsp. daily.  The twitches have decreased by approx. This fall I started aching in my thighs, other large muscle groups, and having muscle fatigue.  I was quite concerned as my father died of ALS.  I talked to my med. dr. about it and he scheduled me for MRI.  However, ALS is difficult to diagnose so I'm not relying at all on MRI results.  IN THE MEANTIME, I visited my Nathuropathic "dr.".  She specifically tested my nervous system.  My myelin sheath tested strong.  (The myelin sheath covers the nerves.  In ALS patients, the myelin sheath dies.)  My neurotransmiters tested strong.  However, my MODULAR-TRANSMITTER (it's a substance which the transports the neurotransmitters) was shorting out which would cause twitches which causes muscle fatigue which causes aching which causes a lot of worrying!  She told me to take 2 tsp. of Nature's Sunshine flax seed oil daily.  I bought a bottle of Barleans (high quality store flax seed oil), but had to take 3 tbsp. of it.  By the second day the twitches diminished by approx. 60%.  I was amazed after having coped with these symptoms for over a year.  I then ordered Nature's Sunshine flax seed oil and began taking 2 tsp. daily.  The twitches have decreased by approx. 98% and the aching in my muscles is improving significantly and I feel stronger.  I'm not saying this remedy will fix your symptoms, but it might be worth a try.  My suggestion is for you to find a good Naturopath ask to have your nervous system muscle tested.  My neuropath had to get quite specific (in fact, when my neuromodulator tested weak, she didn't even know what the neuromodulator is) with the muscle testing to find out what was going on in my case.  Feel free to write back if you want further info.
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Avatar universal
I have some spinal stenosis of the C and lumbar spine.  I was told in Beijing that it could cause some of the symptoms that you describe. (I am Canadian, and my wife is from Beijing.)

Stress, depression, and anxiety can also cause some, or perhaps most of your symtoms.

I took Serax as my legs were very fatiqued after walking for 5 minutes...15 minutes after taking 30 mg of serax my legs were NORMAL, my fasciluation went away, and 90% of my other 12 symptoms went away!

Consider doing what I did - see a psychiatrist.  I saw four, including world renowned pyschiatrist Dr. Abram Hoffer.  Google his name...it will "likely be helpful."

Again, I say this,  " YOU DO NOT HAVE ALS".  Talk with your doctors, if you do not "trust him/her(s) get different one(s).

Shut off you computer and stop doing what I was doing....try to diagnose myself or rule out what appears to be a complex disease...one that you DO NOT HAVE.  Tring to diagnose yourself is not only counter-productive, but potentianally lethal.  STOP IT, PLEASE.  NOW. You aren not dying of ALS.

I would say "good luck", but there is more than luck is involved.  Different branches of science will help you.  Psychiatry, the "status quo" medical establiment, naturopathy, ortho-molecular medicine, chinese mecidine etc.

YOU ARE NOT DYING....GET THAT THOUGHT OUT OF YOUR MIND...I KNOW...I BEEN THERE.

LET US KNOW HOW YOU ARE DOING.

CHEERS,

To emotional, mental, and physical health.

V
Canada.
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Avatar universal
Thank you all for your reassurance and support.  Tohealth, I have often wondered if my  back/spine could be the culprit of a lot of my problems, because I do have major back pain and have for some time.  I am glad that you do not have ALS.  My muscle spasms have slowed down quite a bit this week for some reason, but I am very thankful.  I read where quinnine will help with the muscle spasms.  So, I have been drinking tonic water mixed with sprite and I think that this has really been what is helping the twitches.  I do plan to make another appointment with my doctor and see if I can have an MRI of my neck and spine to see if they see anything wrong there.  Well, I hope you all are doing well, and have a good weekend.
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Avatar universal
I was misdiagnosed with ALS...READ THESE.

YOU DON'T HAVE IT!!! SHUT OF YOUR COMPUTER, AND FIND OUT FROM YOUR DOCTOR'S WHAT YOU "DO" HAVE!!

http://www.medhelp.org/forums/neuro/messages/32600.html

On the above link, more than have way down the page, you will see this: "In China my MRI show protruding discs at my cervical spine that ARE causing cord compression". That was an error is should have not ...ARE NOT CAUSING CORD COMPRESSION. There would have to be a revision of this post before it is sent back to the search engines.

http://www.medhelp.org/forums/neuro/messages/32607.html
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Avatar universal
Hi all~~
    this really is a great support group, and the thing that is making me feel the most reassured these days.  
    After my thumb twitching was freaking me out, I made an appointment with a Chiropractic Neurologist.  I don't really know what that name means, or how actually qualified he is to interpret my symptoms, but I was worried, so I went.  He did X-rays, the usual stuff.  Today I went back in, and he said I have some pinched nerves and "sublaxations"....I don't know if I'm spelling that right.  Anyway, he said that the symptoms I am having are very common with back issues such as this.  I know how Chiropractors will find something wrong no matter what, but he did ease my mind a bit today.  I told him that I went to my regular MD and that he is sending me to a neurologist, and he said that wasn't necessary.  I'm still going to go, because I want to get peace of mind.  
    The thing I think is really strange is how my thumb thing came on, right after I carried those heavy bags right on that arm, and now that particular thumg is doing much better, but I am feeling the twitches everywhere else.  I am having a hard time sleeping at night waiting for the next twitch.  I get them mostly now in my hands, feet, calves, thighs, back.  All pretty minor and quick, but enough to be annoying.  I still worry about Parkinson's, ALS, or MS, as I guess most of you do also.  And, this was mentioned before on another post, now that I've read about how important the weakness symptom is with things like this, I am finding myself to have perceived weakness.  I do the normal stuff each day that I've ever done, but I do have knees that go out and stiffness, especially in my legs.  Is that what weakness means?  I've been having that since before the twitches, but it feels like normal muscle stiffness, which I think would be normal at my age (47)...not old, but not young either....and I am overweight, so I think some muscle fatigue would be normal.  The first doctor I went to did some finger tests on me, and said that I wasn't demonstrating any neurological deficits.  But, I think he was blowing me off.  The usual opinion of a hypochondriac, I guess.  I got my blood work back, which came back normal, but I guess that is good and bad news, in that I was hoping the twitches were from something rather benign, such as my thyroid, or blood sugars being off.  So, I guess, if you are looking at things pessimisstically, that would eliminate two benign things, and send us more towards the more serious things, right??  Yikes~~
    Anyway, thanks for the humorous posts, you're all so much help!  Thanks, Val
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Avatar universal
I'm glad you all find my devastating twitching problem so funny !! Just kidding.

Yes, I've found beer to help. Then of course I've found beer to help most things ! As Homer Simpson once said, " Ah Beer, the cause of, and solution to, all of life's problems ! "

I'm not really a huge drinker, just kidding. I did overdo it on St. Pat's though. It's strange but since I was "under the weather" the next day I had really no twitching symptoms, they only came back over the next few days when my mind wasn't focused on being hungover ! Hmmmm, could it be in our mind's a tad... As I know from a variety of other things I worried about over the years, if something else came up that was "real" , the illness I was concerned about seemed to go away. I had an issue for a few years where I felt I had to yawn to get a deep breath, it was horrible. It just went away one day, now I'm twitching. I almost wish the yawning thing would come back, as I found it less annoying then the twitches ! I think we all need to calm ourselves down. If we had these terrible disease I think we'd know it. When you watch the new they give you story after story about bus crashes, murders, etc. Which are horrible. But the vast majority of people are safe and sound, and the buses are getting to where they were intended without incident. But if you watch the news in a vacumme you'd think the world was ending. It's like us looking up these symptoms. Of course we're getting directed to the worst case scenario, yet I'm pretty sure all of our buses will get there without incident as well. ( am I deep or what ? ! )

Take care and relax
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Avatar universal
I just wanted to thank the two of you for your comments!!  This is such a great support group.  You will not believe how much the both of you sound like me. I have done all kinds of things to test myself, walking on my tip toes, looking at my feet and (yes I have too seen the pulse that I thought was a twitch).  looking at my tongue, testing my reflexes, etc.  It is interesting, kidcoconut that you started having problems after drinking green beer.  This paticular episode with me started after me drinking way too much red wine, and the next day I was sick from the alcohol and then the sore neck started, the twiching, and then it led to the feeling of my leg being weak.  I wonder if we do have BFS, if alcohol can trigger some of these symptoms.  I am not usually much of a drinker at all.  But, maybe it was the stress that led me to drink that is causing the symptoms.  Ha, ha.  I guess sometimes we  have to laugh to keep from crying.....  Well, I am glad that you two responded to my post and  hopefully together we can keep our chins up!! :)
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Avatar universal
I think these responses are really great and lovely. I know from my own case how easy it is to get embroiled in the task of symptom interpretation and how easily one can arrive at a devastating conclusion. I love the shoe story!! (Please, you guys, send me a nice reply like this, when my symptoms yet again lead me to do a posting!)
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Avatar universal
Hi~~
   I saw your post, and also wanted to respond here!  You sound just like me today!!  Omg~~that is so funny what you said about the pulse thing.  I was actually sitting at a red light today in my car, when I looked down at my hand and freaked out at what looked like a twitch/tremor in the front of my hand by my thumb.  As it turned out, it was my heartbeat!  This isn't to say that I don't get the twitches, but it's just funny how, as a certain type of personality, we can focus on everything our bodies do.  I know for a fact that if my husband were to experience everything exactly as I did, he would not be freaking out about it at all.  He would have to be hardly walking to go to the doctor.  
    I am so reassured about what you said about the weakness occuring first, that is supposed to be most of the time, right?  Because, I don't think I have the weakness thing, except in my legs, I will get stiff and my knees bother me, but I do need to loose weight, and I don't exercise enough.  There are always other explanations for things.  I went to a chiropractor recently, and was mentioning my disturbing symptoms, and I know they can't diagnose you, but he said "When you hear hooves, think horses, not zebras"....and I do think that is a good saying.  It's hard not to think of ALS, because of how devastating that would be for us and our families, and how we do have some symptoms of it.  But, from what I've read so far, there are hundreds of other, much more common things, that cause muscle twitches.  
   I have to tell you something funny, that you seem like you might understand.  The other night, my family and I went to an event in the city, and afterwards, we were sitting at dinner, and I was wearing these type of slip on shoes.  I felt the strangest feeling in my big toe on my right foot, and it just kind of felt like electricity, it was terrible.  I sat there during dinner thinking, well, this is REALLY weird, I definitely have some serious disease, because this is like nothing I have ever experienced before, and now after this twitching thing, to have this is so strange.  It kept up during dinner, and I tried to ignore it, and join in the conversation.  I got up to go to the restroom after dinner, and while there, I took my shoe off, and put my hand in it to see if I might have something in there, since my toe felt so weird.  I pulled out what I thought was some type of wrapper, when I realized that I had a beetle in my hand!!  I screamed, threw it down, and ran out of there!  So, here I was thinking I definitely had something serious, and it was a beetle!  My family couldn't stop laughing.  We live in an area that has these types of bugs outside, and they kind of buzz around alot, and I leave my shoes outside sometimes, so there you go.  
   Anyway, I have two weeks until my neuro appointment, and at this rate, I don't know how I'm going to make it!  I always envision myself having the twitches really bad, and having weakness by then.  I wish I could stop being such a nervous wreck all the time!  Actually, I don't really feel like I am, but then I still obsess over health issues.  As I sit here and type, I am having twitches in various spots, such as my lip, and my lower legs.  I have also read where ALS twitches are not widespread, though.  
   Anyway, thanks again for all of your help.  You remind me of my brother, he is younger than me, and he used to get the twitches really bad.  His never amounted to anything other than him realizing he was stressed out, and worked too hard, which he still does.  He also does what you do, which is work out, and feel better about his general health.  Sometimes I remember him saying that the working out would cause a few, though.  He would worry about ALS alot also at the time.  
   Last night I had a large cup of Sleepytime tea, and that helped me sleep.  Also, a nice dip in the hot tub helps.  Does wine or beer really help?  I bought some red wine, but I don't know if that would be a stimulant, or help me sleep.  As you know, going to sleep at night is the hardest part.  Well, thanks again!  Val
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Avatar universal
Hi,

I'm not a doctor but I've been experiencing the twitches since December ( 06). I WISH I had them as long as you ! From everything I've read that in diseases like ALS the twitching comes after the muscle has begun to die. So there is supposed to be weakness, THEN fasiculations, not the other way around usually. And from what I've read, ( and trust me it's been everything ! ) , if you've been twitching for 5 1/2 years you can be assured it's not ALS. ALS is supposed to present with muslce weakness, then twitching, and it doesn't take all that long. I'm actually less worried now that it's been 3 months and I have no weakness. I think you almost certainly have BFS, Benign Fasiculation Syndrome. Anxiety can exhauserbate it for sure. Also worrying about weakness can cause perceived weakness. From what I've read weakness from ALS never gets better, because the muscle is dying. There are no good days/weeks and bad days, once it gets weak it's just gets worse. I know when I first started twitching and made the mistake of visiting a forum, ( which I'm still doing obviously, all though not as much ) I started thinking I was having weakness here and there, and would work out like a crazy person to make sure I was still strong. Then I'd be sore the next day and focus on the soreness and make it worse. I even noticed that I can feel my pulse sometimes in various parts of my body. I'm sure it's from focusing on it. ( I'd feel what I thought was a twitch then while watching it I could see it was twitching in time with my pulse! ) You can really start feeling things that "aren't really there", or are normal. I was getting much better then we had a big party and I had more than my share of green beer, and have been twitching ever since. I'm twitching in my thigh as I type this. I think I have either BFS or a pinched nerve or something in my neck. I always get carpal tunnel, and this burner in my shoulder blades when I'm on the computer a lot. The burner can last months then go away. It would only hurt when I was sitting up, like driving or at the computer. Like a tooth ache in your shoulder blade. 6 times in 7years, 5 times on the left side, once on the right. Carpal tunnel 5 X in the left hand. once really bad. I've got to stop typing as my left hand is cramping right now ! Good luck. I wouldn't worry about it if you've had it that long. I don't see any way possible it wouldn't have progressed in a matter of several months at most. 5 1/2 years, PLEASE! Good luck and try to relax. Green beer is good for that....
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