Now I'm scared

[wright]

I just posted a thread this morning, but since I've done that, I just noticed something different. I have had very mild weakness in my right arm for a little over a month now. Now I just noticed that I have continuous fasciculations in my forearm (in just one spot) . . . it looks like a tiny, beating heart. I can't feel it . . . but I can see it. What does this mean? I always see that fasciculatoins with weakness is bad, but what does "weakness" mean? My weakness is very mild (not clinical). Does that make a difference to the severity of fasciculations?
Do fasciculations usually come before muscle weakness? Is the muscle weakness caused by denervation and then in turn, the fasciculations start? This is the scariest thing I've ever been through.
I also saw a thread on here that showed other conditions that mimick ALS. Could someone tell me what that thread is . . . I can't seem to find it. :cry:

[Tall John]

Check my other posts, we cover this

[wright]

I went to the other posts and I'm still not sure what to think. Maybe I'm just so nervous right now, that I can't think straight.
Are these fasciculations bad? They just started today but I have had that mild weakness for a little over a month. What else could this be?

[Tall John]

It's called a Radiculopathy (I think). Same symptoms as early ALS, should show on MRI.

Pain is usually NOT a symptom.

[Peg B]

Hi Wright,

If you have not done so, please do a search - located at the top of this page for "fasciculations." There may be some other answers for you. See if that helps or sparks more questions. Best Wishes, Peg

[CindyM]

Another suggestion: you might also read some of the posts of others who are or were frighted by fasciculations and weakness. Very few of them developed ALS. It should reassure you. Cindy

[wright]

I have read many posts when it comes to weakness and fascics, but most of those are body-wide fascics. I have a few fasics in my legs, arms, back, chest . . . but those are very infrequent and I mainly notice them when trying to sleep. These new fasics I'm having now are just on the top of my forearm and beat like a little heart . . . they just don't stop. That is what has me concerned. My weakness is mild, but none-the-less, I am weaker than I used to be . . . I am sure of it . . . and the fasics are in my muscles that I'm feeling weakness.
I believe you are a moderator on here (right?) so I'm sure you're as knowledgeable as any when it comes to symptoms. Could I ask you if you think that this change in my fasics (along with my mild weakness) is cause for concern?
Thank you for all you do for all of us on here.

[CindyM]

I wouldn't be too concerned yet. ALS is not something that comes on really quickly. Even the diagnosing part sometimes takes months, since there is now real test for it. Plus, the twitches you feel can be explained by about 90 different conditions, all of which are treatable.

But we will be with you as you go through the testing and waiting process. Hopefully you will be one of our happy cases where we can all congratulate you! :-D

[wright]

You just EXUDE warmth on here, Cindy. I know I might be jumping the gun with my ALS fears, but as I'm sure you're well aware, there are many of us on here. Thank you Cindy and thank you Al and thank you to the other moderator (I'm not sure of his name at the moment) for making this site so wonderful for those of us that have concerns and for those that are going through much more.
One last thing: you say that my symptoms can be due to many other things and I remember from reading another post on here, that there is a link that shows 100 other diseases that remsember ALS. Would you happen to know what that link is?

[CindyM]

Here are a couple. Maybe somebody has the one that lists other diseases?

Meanwhile, try this:http://www.aboutbfs.com.

Or this: http://www.rarediseases.org

Just a caution: don't feed your anxiety too much. Promise us you will spend at least part of today doing something that does not involve the computer!:-D Here in New England we are promised a huge storm but right now the sun is out and I am going for a walk. LOL I may need a wagon and somebody to pull me but I am determined to get out into the sunshine! :-D

[patricia1]

I went to the other posts and I'm still not sure what to think. Maybe I'm just so nervous right now, that I can't think straight.
Are these fasciculations bad? They just started today but I have had that mild weakness for a little over a month. What else could this be?

You should see a doctor and stop guessing. Youll make yourself crasy

[L4dybugg]

I just posted a thread this morning, but since I've done that, I just noticed something different. I have had very mild weakness in my right arm for a little over a month now. Now I just noticed that I have continuous fasciculations in my forearm (in just one spot) . . . it looks like a tiny, beating heart. I can't feel it . . . but I can see it. What does this mean? I always see that fasciculatoins with weakness is bad, but what does "weakness" mean? My weakness is very mild (not clinical). Does that make a difference to the severity of fasciculations?
Do fasciculations usually come before muscle weakness? Is the muscle weakness caused by denervation and then in turn, the fasciculations start? This is the scariest thing I've ever been through.
I also saw a thread on here that showed other conditions that mimick ALS. Could someone tell me what that thread is . . . I can't seem to find it. :cry:

I have seen my husbands muscles do that (shoulders, arms & sometimes legs) looks like little heart beats, he says he can feel them also. They can last several seconds, to as long as four to 5 minutes. I was wondering what that was, and if anyone else was doing that.

[Zaphoon]

Wright,

You have to be putting us on. You know far more about this stuff than most of us.

[Zaphoon]

I want a promotion to "senior member" for my last post.:lol:

[wright]

When I first came onto this forum, I was just as scared as any new person with their symptoms. In graduate school I learned about ALS but I certainly didn't learn about it in great detail; I learned about its outcome as opposed to how it's diagnosed and how it progresses and what can mimic it.

That is a big problem with medical students and students getting their degrees in medical type sciences: sometimes there isn't enough time to get the full story . . . and because of that . . . many of them think they have every "bad" disease they study. There are also many M.D.'s and Ph.D.'s that fall into this pattern. I was no exception. I now make it a point to teach the students more about ALS and bring more awareness to it.

What I chose (and needed) to do is study it, study it, study it . . . talk to my colleagues at the university . . . talk to my neuro colleagues . . . and learn as much as I possibly could about ALS and how it is diagnosed, how it progresses, etc. I also got evaluated by three different neuro's (one of whom I'm still seeing) and listened to what they had to say about my diagnosis. I simply trusted what they had to say, which is what others should also do when they get evaluated by a good neuro. I also listened to the people on this forum who gave me their time when I needed it (Al, Cindy, TallJohn, Mammaoftwo, Patricia1, Northerngirl, ZenArcher, Mt. Pockets, PegB, VMD).

Even though I didn't get a diagnosis of ALS, I promised myself and the people on this forum that I would stay and help those that are just as scared as I used to be . . . and those that simply have questions. I'm blessed with a lot of medical knowledge . . . and now . . . a lot of knowledge about ALS. My beginnings on this forum were very humble (which I have stated in some past posts) and I certainly haven't forgotten those days. So here I am, doing what I can along with everyone else on here.

[sdsyd]

Wright-

I noticed you hadn't been posting in some time and was worried about you. Fasics are VERY VERY strange indeed. Especially when they change. What I've noticed personally ( and I haven't been Dx with ALS yet) is that in BIG muscles they feel different than in little muscles. My first tremor in thumb felt like a heartbeat. My Doc said I can go ahead and call them fasiculations now, because he has seen them in other places. In the bottom fo my feet they feel like when bugs land in a pond. They ripple. In my quads they feel like giant wiggling pieces of licorice and in other places they feel like shudders. You have given so many people encouragement that they do NOT have ALS. What can we do to help?

Cindy

[wright]

Hey Cindy. If you look closely, this thread started back in January of 2008. It was one of my very first posts. L4dybug resurrected it tonight. By the way L4dybug, those are more than likely muscle twitches he is feeling and seeing . . . and can be caused by a number of different things.

Thank you for your concern, Cindy. That was kind of you. I hope all is well with you.

[sdsyd]

Ok- I see now that is an old thread. Nonetheless......with all of your advice on here, I hope you know its okay to talk about your own "junk"

I didn't notice it was an older thread. We went to a BBQ/Wii Rock band party/audition tonight and I must admit I've had 3 Coronas with lime. Maybe 4. Damn I'm a lightweight. I don't think I came close to getting into the band, but have had more laughs than I've had in a long time while listening to an old friend ( MR. tough guy do the vocals for Roxeanne- I LITERALLY had to SPLINT my sides....) and when I got home I was checking in on PALS and CALS and UF's (undiagnosed friends?LOL) and seeing this thread on top was a shocker.

take care-

Cindy

[bossman]

well my nerves have been jumping on my body 24/7 for the last for five months dries me nuts. I can't walk upright without a walker I can't use my hands. Simple things like cut meat. Via like an animal sometimes. It's been hurt. I also have to have a lady come in and help me shower. So the nerve thing as far as I know is a normal thing that happens. It's all part of it.

Good luck with it all

[L4dybugg]

Wright,

I am sorry I did this to you, :oops: I did not realize this was an old thread. And I did not think it would get this kind of reaction, lol.

I was just simply reading different posts, and that jumped out at me about the heart beating muscles, and hubby was doing the same thing.

I want you to know how much you, and this forum means to me, it has been such a blessing to me.

[CindyM]

I am glad you raised this thread, Lorie. Wright is so helpful around here that I was surprised to be reminded that he only joined about 10 months ago! LOL, I was thinking, Wright, that you've been here all along, dispensing calm and reasoned wisdom to all us out here in limbo-land. Thank you for all you do for us! Cindy

[crystalkk]

Zapoon,

I think you need to hit 500 posts then you are considered "senior member".

[L4dybugg]

Thanks Cindy~

I know I'm new here, but I have to totally agree with you, I think Wright does an awesome job on here, and so do you Cindy, Al, and the rest. I know there is alot of care, time, ect. that goes into this forum, and I haved learned soooo much since I have been here, and I am so blessed, and thankful I found all of you. ;)

[wright]

Lad4ybugg

I sent you a PM but I'm not sure if you have had enough posts to receive them, so I'm going to more or less repeat what I said: Why are you apologizing to me? You have done absolutely nothing wrong.

Cindy

When I first saw my neuro about my symptoms, he said I really had nothing to worry about because my fasics were sporadic and that if they got continuous, then there might be a cause to worry. Well . . . as I said in my original post . . . they did get continuous and that caused me concern. I couldn't get a hold of him that day, so I came to this forum for advice.

My neuro actually told me this forum existed (I had no idea) and specifically told me to stay off of it. He knew I was beginning to study ALS (and other similar diseases and syndromes) and all of the things that go along with it . . . and he thought I might venture here. I never would have found you guys if he hadn't mentioned it. I'm not one to "google" for my information . . . but I guess curiosity got the best of me . . . so I looked for this forum.

I did have a couple of glasses of wine that day . . . and I also had a pretty rough couple of years (personal tragedies) prior to my symptoms . . . so it all heightened my level of anxiety . . . but in retrospect, I'm glad. It allowed me to come here. It has been an absolute pleasure to meet you all and a privledge to be here. I truly consider you all an extended family.

One last thing I want to say to everyone: It is ok to be scared. However, you cannot let that fear cause you to be myopic and think that ALS is the only answer to your symptoms. I know it's difficult to do but as we are all finding and learning and know . . . there are so many conditions that can explain the cause our symptoms.

[CindyM]

Hey Lori- we are glad you found us, too!

[CindyM]

Wright- I think on some level I have you to thank for opening my mind to other possibilities. Thanks to you, I had just about decided to declare myself "cured" when I started having breathing issues. (Well, I'd been complaining for months but it was just this summer that the tests proved I really do have mild impairment.)

I surprised myself for only having a short few hours of panic. Al helped, too by PM'ing me that there could be worse things than needing to go on a Bi-pap, which apparently my health insurance agrees, LOL! :lol:

But the upshot is that all of you have helped me to remain calm and keep an open mind. That really helps a lot! Thanks.

[L4dybugg]

Wright

I know I did nothing wrong, if you know the kind of person I am, kind, and caring, (at least I think I am, lol). I was just trying to be polite.
On the internet, you never really know how people take things. And take it from me with experience, it don't take hardly anything at all to set people off these days, lol. I was just playing it safe. ok. :wink: No hard feelings what so ever. :grin:

[Zaphoon]

Wright,

I apologize for not looking closely enough at the date of the posting that started this thread. I did not realize it was one of your very early postings. I will pay more attention next time.

I'd still like to be a senior member. 500 posts, eh? (being former military, rank is still a big thing with me.)

Hey, anybody out there get fatigue in their jaw muscles?

Zaphoon

[puzzled36]

Wright,

Many things cause fasciculations including caffeine, stress, thyroid conditions, low magnesium, nerve compression, excercise, tension, neuropathy, numerous medications. One of the charecteristics of benign fasciculation syndrome are fasics that affect the same site repetitively. Also there is a big difference between weakness and perceived weakness. does your arm get tired after doing somthing or are you unable to do somethings? muscle fatigue is also common in BFS and cramp/fasciculation syndrome. If your fasics on your arm are at the distal part of your forearm, put your finger over the area that is twitching and be sure you dont feel a pulse there, some people can see their radial pulse on the anterior side of their distal forearm where the wrist and arm meet. I have accidently started arterial lines instead of IVs in this area on people with interesting anatomy. I know that it is easy to get tunnel vision when it comes to our own health but if you step back and write down your symptoms as if you were reading a post from someone else, what would your opinion be? You should go with that advice. Also there is a pretty good site that covers neuromuscular dx's. it is www.neuromuscular.wustlu.edu. I hope you find answers.

Take care.

Gina

[Sammantha]

Heyyyy, its just anxiety!!!! Seriously, i have not been diagnosed with ALS but i will tell you how my "twitches" start. First they start out like a big heartbeat, almost like someone is poking you from the inside out and a large area of muscle moves.... Everyone can see it. Then as the muscle gets smaller they becomes less frequent but still there and fell like a worm crawling under your skin or like a small heartbeat... But you do not see a large are of muscle move, they now will look like what you would see on the internet to be faciculations......Everyone can see those too! It looks as though someone has a line of your skin attached to a thread under your skin and pulls it over and over.... My weakness definetely came first, now it is not weakness that a neurologist would consider weak but what a physical therapist considers weak. If you can lift your leg a neurologist will consider you strong... The best part now is that when i stretch or yawn hard certain muscles in my arms, stomache and legs quiver or give a shaking sensation....... I dont tell the docs that one,,,,,,,!

[Al]

Hi Gina. Did you miss a period or letters? That link won't work for me.

AL.

[John1]

Hi Gina. Did you miss a period...?
AL.

Gee Al, why do you want to know?

[BethU]

Hi, all ... this is probably as good a thread as any to jump in on ...

I am wondering why I don't have more twitching. For a few months, I had gentle twitches around my left forearm which I could not feel, along with less frequent ones on my left shoulder and bicep. Now those have stopped. I get an occasional blip on my left bicep but that's it.

My left hand/arm and left leg have gotten weaker, but I have never had any twitches in my leg. My right hand/arm also is getting weaker, but I have never had any twitches there.

I occasionally get a single twitch on my lower back, and I have frantic little twitches under my eyes, which I've had for years and years ... but that's it. Even the fasciculations on my tongue at rest have stopped. In fact, the only time I have had ever had real twitches all over my body was when I was taking Mestinon.

Not that I want to start twitching more, but how come all the people without ALS get twitches, and I don't? Is this a good sign? A bad sign? Or is it meaningless? :roll:

Puzzled in L.A.,
BethU

[Al]

I guess I should have worded that a little better. Gina, the link doesn't work. Period

AL.

[wright]

I thank all of those that have recently written to me in this thread . . . BUT . . . I am doing relatively fine.

I started this thread nearly 10 months ago back in January. This thread was just resurrected by L4dybugg a couple of days ago (again L4dybugg, there was absolutely nothing wrong with that). It was my second post and my knowledge of ALS and all that goes along with it was still subpar at the time. My symptoms had just started and I had no diagnosis.

I have since been diagnosed with a rare peripheral neuropathy (this happened some months ago). It did present itself initially in a similar manner as ALS but it turns-out it wasn't: I had painless weakness (later I suffered from neuropathic pain . . . and I still do), followed shortly thereafter by muscle atrophy and fasics. All I need to do is simply be patient and wait to heal.

Thanks again for all of the concern, though. That is certainly one of the things that makes this site so wonderful.

[olly]

when i read the first post on this thread yesterday,i thought this does not sound like wright.
i thought i had read the name wrong or it had got mixed up,but then i looked at the date:roll:
your first post shows you are just as human as the rest of us:lol:
you have clearly come a long way since then and built up your knowledge of als.
just wanted to let you know why i did not reply,if i saw it was recent i would have.
i hope the neuropthy is healing well and there are no further problems.
:-D

[John1]

I guess I should have worded that a little better. Gina, the link doesn't work. Period

AL.
I think that "wustlu" should be "wustl". There's a working link at:
http://neuromuscular.wustl.edu/

[puzzled36]

Al,

Sorry! I assumed that you start with www but you dont on this site. It is http://neuromuscular.wustl.edu
That one should work.

Gina

[Al]

Thanks John. How are things down your way? I went out and voted today.


AL.

[John1]

Hi Al,

I went out and voted on Saturday. The polling station had a nice long wheel-chair ramp up to the second floor. When I got there, there was a 6" step to get inside! The officials were really flustered and didn't know what to do. Then I spotted what appeared to be a folding table leaning against a wall. Turned out to be a wheelchair ramp so my vote wasn't stolen after all.

Otherwise things are pretty good. Nice fall day here and I heard a meteorologist in Toronto this morning saying that temperatures should remain above average in Newfoundland for the rest of the fall because the ocean is unusually warm this year. Sounds OK to me. The cold really gets to me now.

[Zaphoon]

Wright,

Thank you for sharing your story and diagnosis. Much appreciated!

Zaphoon

[chris_uk]

Lad4ybugg


When I first saw my neuro about my symptoms, he said I really had nothing to worry about because my fasics were sporadic and that if they got continuous, then there might be a cause to worry. Well . . . as I said in my original post . . . they did get continuous and that caused me concern. I couldn't get a hold of him that day, so I came to this forum for advice.

.

So does this mean that the continous ones in my calfs are someting to worry about??

Chris

[jd10]

Since this thread is about fasciculations and all. I just had some ?'s

Right now i am unemployed so seeing a doctor isnt possible right now, So i have to rely on internet research.

Ive been reading about this everywhere and im driving myself crazy over it. I just need some help and feedback. Thanks

But anyways i have constant fascics in my two lower legs. They twitch constantly. But today i woke up and they both have burning sensations, And i have pains in my both knee caps when i walk. any advice links or anything would be helpful. I am soo very sorry to hijack this thread, Cheers JD

[Al]

Hi JD. Burning sensations and knee pain are not normally ALS related. Try googling them rather than twitches.

AL.

[sdsyd]

Hi JD. Welcome to the forum. I have not been Dx with ALS but have found this place a saving grace. How long have your symptoms been present and do you have any other symptoms? If it was sudden onset I would suspect it to be a viral or autoimmune process...those of course are only guesses. Are there any free clinics in your area>?

Cindy

[laurel]

I thank all of those that have recently written to me in this thread . . . BUT . . . I am doing relatively fine.

I started this thread nearly 10 months ago back in January. This thread was just resurrected by L4dybugg a couple of days ago (again L4dybugg, there was absolutely nothing wrong with that). It was my second post and my knowledge of ALS and all that goes along with it was still subpar at the time. My symptoms had just started and I had no diagnosis.

I have since been diagnosed with a rare peripheral neuropathy (this happened some months ago). It did present itself initially in a similar manner as ALS but it turns-out it wasn't: I had painless weakness (later I suffered from neuropathic pain . . . and I still do), followed shortly thereafter by muscle atrophy and fasics. All I need to do is simply be patient and wait to heal.

Thanks again for all of the concern, though. That is certainly one of the things that makes this site so wonderful.
Hi Wright,
Are you getting any treatment? IVIG, steroids, etc.? If not, does this mean you had something like a virus attacking and it is not ongoing like an autoimmune disease? If I'm being too intrusive just ignore me.
Laurel

[jd10]

Ive seemed to have lost my post on this thread?

[wright]

Laurel

I am not getting any treatment at all. They're not sure what causes the neuropathy I have but it isn't really progressive (flare-ups can occur and they certainly have), so it is basically treated by being patient. The leading theories are viral or autoimmune but nothing has been proven. It's no picnic to have it but I won't complain given what other people are going through on here. Thank you for asking.


JD10

I think Al replied to your post by saying it doesn't sound like ALS. I would have to agree with him. Go get evaluated by your physician and I'm sure he/she will point you in the right direction.

[jd10]

Hi JD. Welcome to the forum. I have not been Dx with ALS but have found this place a saving grace. How long have your symptoms been present and do you have any other symptoms? If it was sudden onset I would suspect it to be a viral or autoimmune process...those of course are only guesses. Are there any free clinics in your area>?

Cindy


ive had the constant leg twitching for about 2 weeks now. How would you explain Sudden onset? just one day i noticed my legs twitching every second. It doesnt stop at all night or day. I guess other sypmtoms would be small lesions on the leg that wont go away. they will scab over but wont go away.

How would you all describe Weakness? would it be described as the feeling you get after lifting weights?

i was diagnosed with the herpes virus about a year ago, but i take my meds for that but the fascs dont slow up any.

[jd10]

i found my first thread lol...

It gets hard to even do work aroung the house without my knees and legs feeling week

[jd10]

Hope Everyone had a good weekend.

[BethU]

Hi ... I'll highjack this post to say that the air is really getting bad in L.A. We're about 4 miles south of the Porter Ranch fire, and the smoke is ghastly. I don't know how you firefighters do it! All our little feral cats are covered with ashes. You can't see the ashes in the air, but everything gets covered with them. Tried to get the kitties into the studio, but they have their little hiding places.

PDaddy ... I imagine you're getting a lot of smoke from the Little Tujunga fire. You OK?

Back to the thread:

Someone asked: How would you all describe Weakness? would it be described as the feeling you get after lifting weights?

For me, weakness isn't a "feeling." My arms and hands feel perfectly normal, and it's a surprise every time I find something new that I can't do that I've been doing all my life. It's a constant adjusting downward ... I find that I can't lift a full kettle of water any more, so I only fill it half way. Can't lift my big fry pan, so use a smaller one, etc.

I've done a very little lifting weights, and I would describe that feeling as being tired and sometimes achy afterwards.

Maybe it's different for other people ...

[Zaphoon]

Beth,

Good explanation on the weakness thing. Lifting a gallon of milk or a full 12 cup pot of coffee has become troublesome for my right arm. Lifting things above my head, even light things is difficult.

How about this for a definition of weakness: You just aren't as strong as you used to be. Hence, you are weaker. :-D

Zaphoon

[lydia]

I also have difficulty with the gallon of milk and the full coffee pot. And the laundry detergent. And the 2 liters of pop. Have to use two hands. Can no longer lift a 40 lb bag of soil, but can drag it (until bag breaks all over driveway :(). Have not been able to go up one lousy step with a laptop bag on shoulder-it is like the straw that broke the camel's back. Do these difficulties even matter to doctors? or does it all boil down to whether or not you can resist their pushing exercises in their office? My doctor (three months ago) described my weakness as subtle, when I think it is profound. I know it can get worse, as described by many on this forum, but how bad do you have to be before they go 'oh my you really are weak'....I think it was Robert who described those exercises with neuro as being ones he could "win" even on a really bad day; especially when his neuro is this little bit of a thing. I feel like this is just getting ridiculous...how bad before they really really believe it? My first neuro and I are about the same size and both women. My new neuro is over 6 feet and male. I wonder how I'll fare on the latest strength tests...

[BethU]

You know what's crazy about doctors and the concept of weakness ... with myasthenia gravis (my 3rd dx), doctors discount any patients who report that they feel tired or exhausted. If you don't specifically describe your problem as "weakness," they simply discount that symptom. Or so I've read on a MG forum ...