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crafttam

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First post here. Hate to bother you but no idea where else to turn. 49 year old mom of 5 year old terrified I may have ALS. Sure we all have a few twitches now and then. But around the first of May I developed a persistent twitch in my lower left ribs (never had one there before) and each time I'd slump at my desk or turn a certain way the twitches would fire off for 10 seconds or so. This continued for about a week and then they've gone away in that area. Around the same time the rib twitches came I noticed a twitch just to the left of the kneecap in my right knee. I sort of tuned that one out at first because the infrequent twitches I've remembered in the past have mostly been leg-based. However, the twitch in my knee became a lot of twitches in that right leg, mostly from the knee to the ankle with a few in the hamstring and close to the groin. I also get a few in other parts of my body (mainly the left calf, left knee and behind both shoulders but I'd guess 75% or more are lower right leg.

I became very nervous about ALS because I've never twitched like this before and I did do some strength testing - standing on my toes, heels, doing about 30 seconds of pretend jump rope. Somewhere around when all this was happening (I think just prior), I had also gone on a 1 mile walk (something I commonly do but haven't done much of since winter) and I noticed fairly prominent shin splint pain which is quite unusual for me.

Around May 10th I developed a very focused spot of pain in my right calf, directly in the back and just below the large calf muscle - maybe 8" up from the heel (I'm tall - 5'9" and about 125lb). Each time I'd try to do that 1 mile walk I'd have to quit early because the pain would become intense - almost like a cross between a bad bruise and a cramp but the muscle didn't get hard like a charley horse (which I've never had btw). I also experience pain sometimes when pressing the brake pedal in the car or other things that require me to press down with my toes. I get a lot of twitching in that area of the calf, too. I also started experiencing some twitching along the inside and backside of my big toe and into the arch of my foot. Also, when I stand for too long (i.e., 2 hours at a birthday party yesterday), my calf gets very stiff and tight feeling and I ache up into my hamstring and the base of my glut, more on the onside and backside of the leg. Not like sciatic pain.

Because of the aching in my leg my doctor had me tested (blood test and ultrasound) for a DVT. No blood clot. I had artery testing because she thought at first she wasn't getting a good pulse in my foot. No issues. I was freaking out with fear so she sent me to Univ. of Iowa hospital for an EMG on 5/22. It was clean - however it was only about 2 weeks into when the twitching first started.

Fast forward - the calf pain doesn't want to get better despite my giving up heels (I have an office job and am at my desk 99% of the time), I've not been walking much because of the pain, andd I'm frustrated and afraid. So doc orders an MRI of my calf. It does show trace edema in the soleus muscle where it connects to the plantaris tendon and bone so maybe that's part of the pain, but it's a very minor injury for the amount of time it's lasting.

I'm freaking out now because as of about 10 days ago I started getting an internal vibrating or very fast tremor feeling in the big toe of that foot that radiates down into the ball of the foot and as of about 6 days ago the vibrating is less but now I'm getting almost constant mild fasciculations in the bottom of the big toe and the ball of the foot. They're mild or non-existent when I sit down and elevate my foot and not bad when I'm in bed, but when I'm standing on the foot or am seated and am resting my feet on my toes (a habit of mine), they go nuts! I've read that twitches in muscles in use are worse prognosis.

I saw a neuro here in my city who supposedly specializes in ALS last Tuesday. He checked my reflexes and strength very quickly, read the EMG report and declared me ALS free. I called him again late in the week to talk about the toe/foot twitches but I don't think he's hearing me. He brushed me off and said "maybe it's a nerve in your back". I don't have any back pain.

I am terrified to the point I can't function. I'm a professing Christian and right now I'm really struggling with fear that is consuming me. I'm afraid I may have had the EMG too early. I don't understand why things keep getting worse in terms of the twitching, and why the foot twitches so much (and they're tiny twitches - not big things that move a toe) when I'm bearing weight on it.

So scared!
 
I forgot to mention with the EMG that while they did nerve conduction studies on both the right leg and right arm, they only did the EMG needles on my right leg and they did 3 needles in the mid-calf toward the front (none in back) and two needles in my thigh. Nothing in the ankle or foot.
 
You don't have ALS. No way. No how.

I'm not a doctor, so I don't know if you have a disease, but I know ALS pretty well and you don't have it.

Listen to your doctors; they know much, much more than you do. In fact, they know so much they don't even bother to explain their reasoning because it would take years of medical school simply to understand their explanation.

First, the "nerve in your back" is a perfectly plausible explanation for pain in your legs. Consider this: ALS--the paralyzed muscles in a foot or a hand--are caused by destroyed nerves in a patient's brain. ALS is a brain disease.

Second, the EMG can pick up nerve damage months before any symptoms occurs. Your EMG was not too early, and it was properly done. The EMG was clean, therefore, you don't have ALS.

The hallmark sign of ALS is a paralyzed muscle--limp and useless--usually a hand or foot muscle. Your doctor found no paralysis. You don't have ALS.

I've read your posts thoroughly and can't find any reason to be concerned about fatal or incurable diseases. My best guess is a common pinched nerve.

The first signs of ALS are not twitching and pains. Any healthy person can easily have twitches and pains. You may have read of people who had twitches during ALS--they also had paralyzed muscles. It's the paralyzed muscle that is concerning, not the twitches. Further, in ALS the paralyzed muscles are not painful. They don't feel anything at all.

Go in peace. Enjoy your child. Thank God you don't have ALS. Listen to your doctors.
 
I agree 100% with Atsugi. None of your symptoms would indicate onset of ALS. Enjoy that 5 year old and be glad you don't have a terminal disease!
 
So you wouldn't be concerned about increasing twitching in the right toe and ball of my foot that seems to be triggered to really fire up when I am pressing the foot against something (i.e., the floor when standing or when I sit because I tend to bend my legs under my chair so that my feet are resting on the undersides of my toes and ball of my foot) rather than when the foot is at rest? Or, is it possible that it's always twitching down there and I'm just not feeling it until I press it against something and then about 30 seconds into the pressure the muscle gets really angry and twitches harder.

The other twitches (right calf mostly) fire both at rest and when in use. They're firing as I type this and I'm sitting with my right leg crossed and hanging over my left leg in order to keep the foot off the floor.

You don't think I need to request another EMG?
 
Correct. Read the sticky about twitching again. You don't have symptoms of ALS. And even if you did ( you still do not) it has been less than a month! I am told at my clinic when they are following something suspicious but not diagnostic on EMG the interval is 3-6 months. In people whose EMGs showed something
 
So you don't think it's worrisome that the twitching in the toe/foot seems directly related to my putting pressure on the area or using the muscle? Once I'm up and around and standing more during the day it ramps up. I thought if twitches were more at rest or at night that it was more likely benign. I can roll my foot over to the side when sitting and rest the outside of it (by the pinky toe) on the floor and I don't seem to have the twitching as bad. Only putting pressure on the ball of the foot seems to really get it ticking. And no, it's not my heart I'm feeling. I've already ruled that out - totally different rhythm. It's a thump on the underside of my toe most of the time but sometimes it's in the ball of my foot or even in my 2nd or 3rd toe. And sometimes my foot feels like it's going to cramp but it doesn't.

One other thing - my muscles in the leg seem to feel tired and stiff easily. Not so much when I'm walking - though of course I'm walking much slower and with a shorter stride than I was 2 months ago before the calf pain flared out of nowhere, but once I'm done and I sit down, I'm stiffer when I get up again - from my ankle up to my hamstring.
 
CRAFTTAM: Regarding your twitches, you should really read the sticky post that is stuck at the top of this forum. Your twitches have nothing to do with ALS. There are lots of reasons to have twitches, and most of them mean nothing really. The fact that your twitches come with effort mean nothing as far as ALS is concerned.

Regarding your muscles: You feel tired and stiff and have pain. In ALS, the muscle simply doesn't contract, it doesn't work, it stays limps and useless: paralyzed. The muscle doesn't feel tired or stiff--it simply doesn't contract because the nerve in the brain that sends it the "contract" signal is destroyed.

Trust us, we really know ALS better than most doctors, and much better than any website you've seen. You don't have ALS.
 
I guess my concern is this: Could I be one of the 6-7% who present with fasciculations before weakness, and could the pain (i.e. the very small calf injury that I have no recollection even doing) be related to my muscles being slightly weak already and more easy to injure or tire? Could ALS start in the toe area and ball of foot and have been missed on the first EMG because it was early and wouldn't have captured those foot muscles? My concern is not so much with the pain as it is with the twitching. I went to home depot and was on my feet for maybe 15 minutes and by the time we walked out that spot under my big toe and into the ball of my foot was going nuts in the store when I was standing on it. It's never quite calmed down since we got home. This is so much worse than even a week ago when the toe twitch was just sporadic. Now it's every single time I put pressure on the toe or foot for any length of time, and my calf is firing off twitches as I stand here. I have some very simple stretches from the physical therapist for my calf and when I try to do them (one is a simple lunge position you hold for 30 seconds) my leg trembles like it doesn't have the strength to do it. This is just not who I was 2 months or even 6 weeks ago.
 
We have given our opinions as people who have personal experience with ALS. Asking over again will not change our answer BUT to the best of my knowledge none of the members of this forum are Board Certified in neurology. Call your neurologist and address your questions to him/her. I have had 7 EMGs for research. My symptoms began in my ankle. Not once have I had an EMG at ankle level or below. The ankle problem came from a lower leg muscle. The doctors know their anatomy and where to look and it is not necessarily the place where you experience a symptom. Tell the neuro and see what they say. The issues of twitching and what I just said are addressed in the sticky
 
I did read the sticky at the top of the forum. And I know you're not doctors, but you have a lot of experience because you are living it which the doctor isn't. So I'm looking for others' experiences.

And I did call the neurologist today. He called back to say he has nothing more for me right now and isn't really sure why I'm twitching but maintains that he doesn't believe it's ALS. No interest in doing any further testing for anything or imaging my back to see if it's spine-related (because I don't have back pain other than some mild stiffness for the last couple days and because as he says "we're not going to do surgery right now anyway even if it is your back") and all he could suggest was a trial of gabapentin. My husband took it in the past for some issues he was having and it was pretty hard on his stomach so I'm leery because I have heartburn issues but I may try it because I'd do about anything semi-safe right now to get the twitching to subside.

I do apologize for being annoying. It's not intended. My heart breaks for each and every one of you who are struggling and I know I don't deserve to be healthy any moreso than any of you. I think that's the thought that eats at me the most. I worry that I'm not going to be around to help my husband raise our 5-year-old. We adopted the little guy when he was just an infant when my daughter (his step-daugher) was making very poor choices and putting the baby's health and safety in jeopardy, DHS was involved, and her parental rights were voluntarily terminated. I knew it would be challenging because our parents are old (my dad is gone) and in poor health and aren't able to be a backup in an emergency and our other children (his three and my other adult child) either aren't in the area or aren't in a position to help. So it's just my husband and I raising the little guy and I worry that something will happen to me and then it will be all in my husband's hands. It would be a lot for him to handle if my health failed on top of it and he was responsible for caring for me as well as the little guy who seems for the most part okay right now but who was pretty much pickled with alcohol before birth, so we're not sure what the future may hold as he gets closer to his teens.

And it's been a rough year for my mental/physical health. I went from a couple bad respiratory viruses last fall to dealing with the oddness/grief of dealing with the loss of my ex-husband in an ATV accident (married 20 years/divorced 10 - hard not to grieve but have to do it silently) and my daughter completely melting down from the loss and ramping up her alcohol and drug use exponentially (unfortunately so much like her father), to my heart arrhythmias going through the roof (found out I had fluid in my pericardium - probably from a bad respiratory virus) to developing burning lungs/bronchial tubes/breathing issues in January (x-ray showed possible emphysema even though I've never smoked and don't live in a smoking house). Doc sent me to pulmonologist who ran more tests and said no emphysema and no asthma, thank the Lord, and that again it was probably just a virus or the lingering effects of the pericardial issue. Heart is better - fluid is gone - rhythm is still a little touchy but better. Lungs are better. I was thinking things were looking up and then ka-BAAM! The twitching started and it's running on overdrive now. And I'm wondering if my body is so run down that something bad has truly taken over now. Hence the ALS fears (and the fact that I do have a relative, albeit she was 2000 miles away and I know zero details other than it's Mom's cousin) who passed from ALS several years ago, probably in her lat 60's or early 70's.

So yes I am probably somewhat stressed. But I really am experiening twitching that is getting worse and yes it's in a number of places and I know stress can make twitching worse. I'm just not understanding how stress would cause the twitches in my foot that are getting more prevalent and that fire when I'm putting pressure on it. I try and tell myself that from what I read ALS twitches are generally non-stop (which is what the neuro who did my EMG told me), but then I read that while they may be frequent, they come and go (which would be the case with my foot. Well, I twitch all over daily but other than the foot I may go periods where I don't notice any for several minutes and I really don't notice much when I go to sleep or when I first wake up. It's after I'm up and around that things heat up.
 
Oh, yee innocent. You are experiencing the effects of a GREAT deal of stress and you refuse to see it.

I've had to re-read what you've written and I've come around to finally saying that stress would account for every one of your symptoms.

YES. Stress can really do all those things. Believe me, I know. During my decades of military service and throughout my retirement, marriages and funerals, I've experienced the physical manifestations of emotional stress. You've got it bad.

What you don't have is ALS. ALS doesn't do those things. ALS is about paralyzed muscles--limp, useless, non-contracting muscles. Worrying about ALS is simply adding to your stress.

If I were you, I'd go see a full-fledged psychiatrist (not a psychologist) because they understand the body as well as the mind. See if the shrink can fix you up. Good luck.
 
I did start the gabapentin last night before bed. Found out this morning when they say it can cause dizziness, boy are they correct! More like vertigo. Hope it passes soon. My right foot twitch started even before I got out of bed this morning and is in full swing now if I set the foot on the floor. And this morning at breakfast I felt a few twitches under the arch of the left foot, so my hopeful theory of "maybe I've pinched a nerve in my back that's affecting that leg/foot" sort of goes out the window. Still most twitches are in my right leg, but I have a fair amount in my torso and other leg, too. And in thinking back now I remember several months ago as I was walking in to work it seemed like my legs were getting more tired from walking in the heels but I chalked it up to being almost 50. Of course now over the last month or so I've been primarily in flats so I don't know.

And no, I shouldn't be researching but I stumbled across someone's story that sounds like it's started off just about like mine except their constant twitch was in an arm, not a leg. I realize the doctor suspected something when he first saw him though he doesn't say what led to that expectation. But he didn't see his doc until 2+ months into things where I was only 2+ weeks into it when I had the EMG and just over a month when I saw the neuro for the consult.

Life Does Not End with an ALS Diagnosis - The ALS Association

I don't deny I have stress and more beyond what was mentioned (i.e., constant fears that I'll get a call from Minneapolis some day telling me my daughter has been killed or has OD'd just like several of her close friends) or that I will cause major marital issues by continuing to funnel so much money to her to keep her from being homeless because I'm not ready to bring her and her lifestyle into our home with the young child. But I've had stress for years (20 of them married to an alcoholic and recreational hard drug user who I loved dearly but who loved the substances more than he loved me), and none of that caused twitches that are now permanently stuck in my right foot or a calf that gets sore/crampy when I use the muscle too much. Digestive issues, yep! More heart arrhythmias, yep! Depression, yep. Maybe a few random twitches here and there - I don't remember. But not localized near-constant twitching.

I just so want answers as to why each day things seem a little worse, and I feel like I'm spinning in the wind.

I need take the advice someone gave me this morning and spend my worry time praying, I think. It's just hard with all the unknowns. We have a trip to Disneyworld planned in a month and I want so much for our 5-year-old to make good memories. This is a big deal for him. Who knows when/if we'll be able to go there again? I don't know if with the way my leg currently is that I can even do that much walking so it's eating at me.
 
honest mate, you have been told.

You have given your story, you have been told numerous times you have NO ALS symptoms.

You have to leave now. We are not going to be convinced by these long posts of yours, please seek help from you doctors and tell them how anxious you are. The people here are actually dealing with a terminal illness, I mean really.

Probably the thread would be best closed.
 
When you go to Disneyworld get yourself a scooter. They're at every park and anyone can rent them. Problem solved. And stop worrying about a disease you DON'T have! Have a great time with your little boy!
 
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