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IN76

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Hello Everyone,

I can't believe I am posting again. Since my neuro visit he ran me through clinical tests and said everything was normal.

I mentioned to him about the twitching everywhere and he didn't seem concerned at all. Over the past few weeks I have gotten use to it. I am on Zoloft now for around 10 days and hope it kicks in. The twitches they are small quick ones, have been everywhere, legs, arms, back, butt, feet, thighs and random. I do have a couple of places where they come and go everyday between my right index knuckle and middle finger and right thigh.

I thought I was okay with it until today. I was changing pants and I noticed that my right thigh was going crazy and I could see it but I couldn't feel it. Like worms. I lost it. I went to lay down because I felt a panic attack coming and I looked at my thigh again and they were gone. I was use to the one's I could feel because they are like popcorn, one here one there, one everywhere. They aren't constant all day but they are there.

I guess I am terrified, because I have read that it is the twitches that you can't even feel that are not good. I saw them, didn't feel them. From looking reading into the stickies, I would think that by the time you notice the twitching you would know something is not right.

I am still a little fatigued, but I can still function 100% physically with arms/hands/legs/feet, and the tingling/numbness has gotten better, but still there off and on. I don't know if I am ruining now own life with this twitching stuff. My wife is frustrated and demanded I call the psychologist which I did.
 

Nikki J

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The neuromuscular specialists will tell you that twitching is NOT significant by itself. They look for other things primarily clinical weakness. Good for you for calling. Good for your wife for insisting
 

skipper66

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Best thing you could do for yourself right now is log off the internet and do something relaxing. All your symptoms at this time appear to be anxiety related and not at all ALS symptoms at this point. Seeing a psychiatrist is your best option at this point. Good luck. Anxiety isn't a fun thing to have to deal with either. But, I honestly don't feel when can help you at all on here.
 

IN76

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Thanks. After my post there were a few others after that were reassuring. Clinical weakness seems to come before twitching not the other way around.
 

mkboreson

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Do you twitches go 24/7?
 

IN76

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It's been 5 weeks of body wide twitching. They do not go 24/7. The first few weeks I had more. In the last week they have decreased in frequency. The less anxiety the less twitches. They are random. One here one there. Sometimes i can go hours without them and then i feel a quick one here or there.
 

Atsugi

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It's been 5 weeks of body wide twitching. They do not go 24/7. The first few weeks I had more. In the last week they have decreased in frequency. The less anxiety the less twitches. They are random. One here one there. Sometimes i can go hours without them and then i feel a quick one here or there.


I've had this for years, decades, and I do not have either ALS or an anxiety disorder. I consider them amusing.
 

IN76

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Atsugi- My neuro. hardly listen to me I told him about them. He just ran me through brief clinical test and told me to stay off internet for symptoms.

I just need to calm down. And trust the Neuro with his years of education and experience instead of my google degree i got in hours.

I haven't fell, drop things, or anything like that.
 

IN76

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Recently scared.... but is it time to move on?

I really honestly want to move on from here. It is my fault for spending countless amount of hours on ALS, from Google stories to YouTube. Just when I think I’m ready to move on I read something else that reignited this viscous cycle. I have been on a Health Anxiety and BFS forum feeling great until I read that someone on BFS Forum was diagnosed recently with ALS.

I guess I was very concerned because he made it clear his case was progressive and that some people do wake up and can’t lift a limb is true, but he believes would be the exception and not the rule. That frightens me, I was believing that ALS just kind of creeps up on you. I know the sticky stays failing, not feeling. He was reassuring to everyone.

It has been 9 weeks since my initial symptoms started. 7 weeks since the main ones that are concerning to me have started and going on 6 weeks with twitching. My right side is what bothers me the most. The tingling feeling in my right foot and hand that comes and go has gotten a little better. I get worried because my right thigh sometimes has burning feeling and I do get twitching in there sporadic throughout the day. My right arm feels weak and wrist/forearm/bicep/shoulder are sore a lot. I did just started to teach tennis again on March 16th and I’m right handed, so hoping just overuse. I can walk pretty well, but sometimes just feels hollow in that right leg.

From late October-Mid February I did have an injury to my right knee-micro meniscus tear and severe tendonitis and in my right foot I had severe inflammation. During that time I could barely walk. I needed rocker shoes to walk. It wasn’t until Mid/Late feb that I finally got better . Unfortunately, that is time I started to feel bad. So, I’m hoping that hollow feeling and burning thigh could just be I’m still in recover phase. If push comes to shove I can run out the way of something if I had too.
I have been to GP and Neuro. (March 31st) I did mention ALS and my new right side symptoms and twitching and he didn’t seem concerned at all after his brief clinical exam. He said he didn’t want any further test, except for an MRI of my neck. I read a lot that EMG is gold standard, but he not going to give me one. I guess I need to trust my Neuro with his many years of experience and education, instead of my Google degree I received in hours.

I do have a psychiatrist and I am on Zoloft. I am 38 male married with 4 children; at first they were supportive, now I feel as if I’m ruining my family and pushing them away. I spend more time laying down with my phone in the air searching for things, instead of living life.

I guess, I was getting better and spending majority of time on Health Anxiety Forum and BFS forum and I saw something that restarted everything.
No new symptoms-since my initial post on April 2nd.-I don’t feel great, but I can do all my normal day to day things. I haven’t got any worse but not getting that much better either. The only thing that has improved is the twitching. It’s still there, but just a few pops per hour in random places.

Do I need to move on with these symptoms? I hope to hear some more knowledge from others on the board. Thank you for your time.
 

Nikki J

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Yes you need to move on. You are still reporting feeling and that is not it. Really. ALS begins with loss of function not of the whole limb if limb onset but of one muscle. That failure is sometimes more obvious than others depending on the muscle but a neurologist will know by your description what to look for and where to look. The EMG is the gold standard for diagnosing ALS but it is not necessary to do one to exclude ALS if the history and exam already do. If I decided I had a brain tumor but had no symptoms and no signs on clinical exam that indicated one I would not expect to have an MRI. You should not expect an EMG if it is not clinically indicated. Too many people get EMGs in an attempt to calm irrational fears. It does not work. We see it here and you see it on the other forums
 

Atsugi

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Atsugi- My neuro. hardly listen to me I told him about them. He just ran me through brief clinical test and told me to stay off internet for symptoms.

I just need to calm down. And trust the Neuro with his years of education and experience instead of my google degree i got in hours.

I haven't fell, drop things, or anything like that.

There. You already know the answer. I've read your symptoms and don't see ALS. You neuro "hardly listened" because he heard you and knew instantly that no further testing for ALS was warranted.

Time to move on.
 

lgelb

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Going from "barely walking" to the mid-Feb. month-before-teaching, when I'm sure you pushed yourself, and then actually teaching tennis could certainly irritate some muscles.

I'd go back a step in your rehab, with lots of static stretches, pulley work, treadmill and the like. Even fast walking is a great way to shake things out. Maybe see a sports PT and get a more scientific regimen going based on your history and activities. Watch your diet and sleep, and listen to your wife, who, like all wives, knows best. You have no reason at all to feel terrified. But you have five good reasons to put your phone down and start engaging with your family.
 

IN76

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Nikki J- Thank you for your compassionate help, it is much appreciated. I have to accept if I needed an EMG I would have had one and should be happy that I don't. You are definitely correct in that other forums many people have had several EMG's and still not convinced.

Atsugi- Thank you for your time. You are a straight shooter :)

leglb- I will definitely see someone about rehab, hoping you advice is spot on. Thank you for taking your time.

I have learned a lot and I hope that I don't have to come back here. Not matter what is going on with me or anybody else. We never know when our time is up, no guarantee's we going to show up tomorrow. I am going to try and focus on living for the moment and spending time with my family and not my phone.
 

IN76

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Still trying to move on.

Last night I noticed that my left big toe looked a little lower than right one. Really never noticed it before. Upon further examination I noticed that I could move it fine up and down but it I can't bend it. I can bend my right foot toe pretty good. This morning same thing.

This is the same foot I had MRI on in December that has severe inflammation. I did notice then my four little toes couldn't bend but now they do. I really don't think I remember noticing anything with big toe. I never really paid attention until I noticed the slight drop in it last night.

I'm a little nervous about this. I can walk on tip toes but not sure if that matters with not being able to bend right toe. Any insights? Thanks
 

Nikki J

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I am confused you told us before it was the right foot that had the severe inflammation now you say left then later in post right toe. But I don't think it has a thing to do with ALS either way. Maybe related to repetitive trauma from tennis.
 
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