Old 09-03-2018, 07:18 AM #1 (permalink)
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Post Als fear Got me worried sick

Hi I am new to this forum and I have had an interesting 2018. I am a father of 4 girls under 10 and am 36 years old. I will premise this by explaining that I had torn tendons in my right ankle for the first 6 months this year and just in August had surgery to repair them and currently in a moon boot for last 3 and half weeks. ( this will be clarified further down.

Earlier this year both my right and left calf muscles were tight for no particular reason to the point where they were sore to touch and I was applying deep heat to relieve them. This pesrsisted for a few days and finally subsided. Then in late April I noticed one morning upon waking up that both calf muscle were twitching like crazy (I mean crazy). The twitching at first was only annoying and more noticeable when lying down. This prompted a visit to a neurologist who conducted a nerve conduction study NOT A EMG which I thought was the same thing up until the other day. This was 4 weeks from noticing twitches. The NCS was fine and he just looked at my calves, banged my knees to watch reaction but conducted no strength test. His conclusion BFS due to anxiety,

He order a CT of lower back and bloods. And to come back in about a month. About a week after I noticed twitches in my thighs faint at first but the more regular, but not as consistent as my calves which twitch over a thousand times a day. In that month between appointment I also noticed that when I eat i often have small piece of what I was eating stuck in my throat, I donít choke but I can bring it up and swallowing just doesnít clear it. This has been off and on but regular enough to be concerning, I also began and still feel twitches around my feet and on the soles which are extremely fast regularly.

My CT scan showed that my L3 and L4 were slightly bulged but in his opinion not enough to impinging the nerve. My bloods all normal except CK elevated over 300 and ferritin high. This lead to blood tests for heamotomochrosis and an ultra sound on the organs in my lower abdomen which were all fine. And ended up not have hemotomochosis. With an ankle injury and pain regularly ferritin and CK was linked by GP to injury in ankle.

At the second neuro appointment he did not touch me or look at my twitches. I had written a list of questions for him. Could t be Parkinson? No. Could be MS? No. His answers were short and no real reasons why provided and he seemed annoyed by all the questions I had. He then concluded I have definite BFS thanks to anxiety. He noted my concern about atrophy of my right calf muscle where fasicukations were the worse and he and a physio have recognised it is smaller (my dominant leg) but both put this down to ankle injury and that as a pain response the lower part of my right leg was not functioning properly to protect itself as that is what our body does in response to pain.

Fast forward to August (second neuro appointment was early June) I now have fasiculations in my face from time to time. I get buzzing sensations in my thighs like a phone is ringing inside my leg. Rapid thigh movement on out right thigh that are super fast and seems more pronounced after exercise. If I spread my fingers out then try to move them to make an alien hand (thumbs out , two fingers together space and other two finger together) they shake wildly side to side and this is on both hands. And just in th last 2 days my arms have started twitching more and can feel small ones in my fingers and palms even whilst typing this.

Now I have had my surgery my right calf muscle is 3 cm smaller than my left. I have sent a referral to an new neuro for a a second opinion. But waiting for appointment and will be asking for EMG. Oh I can still tense my right calf muscle but canít maintain it as it soon fade after holding for a while and twitches can still be seen. If held half tensed the calf muscle looks like it is havin a fit.

Lastly, I have myclonic jerks not just when going to sleep but just during the day. When sitting at the computer or on the couch In legs and arms. And over the last 2 nights I have been woken up my arm jerks.

People tell me to not think of the twitches, but it is hard not to. Iíd love to accept that anxiety is causing all this but I feel that something else is definitely up. I am a teacher and it is becoming harder to hold my arm to write on the board as my shoulder starts to burn and ache quickly which wasnít a problem last year. My hands feel clumsy I have dropped things from time to time but i over analyse everything including my speaking so I now feel like I canít speak properly and I stutter often. At this stage Iím into my fifth month since symptoms started and the progression from calves, to thighs to arms has a certain pattern to it.

As a dad, I just keep focusing on what Iíll miss out with my four girls if it is something bad. I know it may be nothing and I can only imagine the Emotional toll this has taken on you and your family in this forum if you have ALS. Any thoughts anyone could provide me would be helpful and I am hoping not to provoke negative responses but realistic and encouraging advice.

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Old 09-03-2018, 06:23 PM #2 (permalink)
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Default Re: Als fear Got me worried sick

Ah good you are a teacher. Let me describe to you what happens when you send home the yellow note home that says someone in your child's class has HEAD LICE. The first thing that happens is people start itching. Everybody and the pets get checked for HEAD LICE. No bugs, no nits and still you itch. Nobody on the block has HEAD LICE, scratch, scratch. You are probably scratching now just thinking about HEAD LICE. You do not have unexplained weakness or atrophy. You do have muscle twitching and have become obsessed about twitching like someone with the dreaded yellow note. Anxiety is worth exploring with your dr.
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Old 09-03-2018, 06:36 PM #3 (permalink)
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Default Re: Als fear Got me worried sick

So you were in pain from torn tendons for several months. Your body is likely still responding to that pain and with anxiety, 4 kids and post-surgery pain, dollar to doughnuts, your sleep architecture is compromised as well, further compounding twitching and other niggles.

I would consider massage/other bodywork with a qualified therapist with a neuromuscular specialty, and also re-evaluate your sleep environment and pattern. But nothing you have said sounds like ALS.
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Old 09-04-2018, 07:34 PM #4 (permalink)
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Default Re: Als fear Got me worried sick

Hi Vincent

You use a good illustration and as mentioned I am waiting for psychologist appointment for anxiety. The twitch that scare me most is the right calf muscle. It twitches at rest and when tensed. In tensed position you can see every single muscle fibre rolling, waving and quivering like crazy. That canít be normal right? Could this be really just due to ankle injury and less use of the calf?
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Old 09-05-2018, 08:22 AM #5 (permalink)
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Default Re: Als fear Got me worried sick

Muscles twitch for a hundred reasons. Usually it's nutrition and hydration, I think.



I watch my twitches with amusement, it's funny to see what the body does all on it's own. I point at the twitch and say, "hey,kids, look at this!" for fun.


(I do not have ALS.)


Neither do you.

All my life, my biggest twitches have been entirely due to emotional stress.
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Old 09-07-2018, 02:13 AM #6 (permalink)
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Default Re: Als fear Got me worried sick

Hi Mike

So I guess you are a bfser too? Can you feel them all day. My calves are so annoying.
My right calf seriously does not look right when I tense it and see the whole muscle rippling away in multiple places at the same time. I was wondering would this be the kind of twitching you would see in an ALS diseased muscle. I know I am anxious, and I would love to see the uniqueness in it but I just can’t seem to get to that place.

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Old 09-16-2018, 01:04 AM #7 (permalink)
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Default Fingers Shaking Wildly

Hi

I have another thread that explains my last five months. My big question i would like answered relates to my fingers. When i hold my hand out in front of me and spread my fingers wide or just in natural spread position limited shaking. When i try to bring my fingers together, my pointer, ring finger and pinky shake wildly- like it doesn't like that movement. I have no control over the shaking. Noticed this about a month ago. People i show are surprised by the shaking. I twitch all over but mostly in my calves and thighs but about 5 days ago twitching is slowly becoming regular in my arms, some faint and some violent. Any thoughts on this? This video on youtube shows pretty much the same shaking fingers i am talking about

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Old 09-16-2018, 01:31 AM #8 (permalink)
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Default Re: Als fear Got me worried sick

Mod note, merged threads. Sheeks, please continue posting here, in your original thread. For further posting rules, refer to the pinned posts at the top of the DIHALS subforum here:

Do NOT open multiple threads - read this if your thread disappeared
and here:
READ BEFORE POSTING! Answers to common concerns about possible symptoms!

Keeping all posts in a single place makes your information easier to access for people here, which helps folks provide the most informed answers.

thank you

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Old 09-16-2018, 04:47 PM #9 (permalink)
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Default Re: Als fear Got me worried sick

Lots of people have tremors. My mother was prescribed a beta blocker for them 30 years ago. I've had tremors since my 20s.

Stop all caffeine and cut way back on sugar. Get plenty of hydration. See if that helps. Anxiety alone can cause tremors.
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Old 09-18-2018, 02:16 AM #10 (permalink)
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Default Re: Als fear Got me worried sick

Hi

I have been on beta blockers for 3 months with no change to fingers twitching like this.
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Old 09-18-2018, 02:59 AM #11 (permalink)
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Default Re: Als fear Got me worried sick

Just because a beta blocker doesn't help the twitches doesn't mean they're anything to worry about. Ask your neuro or orthopod about post-op PT once the moon boot is off.
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Old 09-18-2018, 09:22 AM #12 (permalink)
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Default Re: Als fear Got me worried sick

Quote:
Originally Posted by Sheeks View Post
Hi

I have been on beta blockers for 3 months with no change to fingers twitching like this.
They didn't take away the tremors for her either. Did you stop ALL caffeine?

Follow up with your doctor.
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Old 09-20-2018, 08:24 PM #13 (permalink)
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Default Re: Als fear Got me worried sick

I don’t drink coffee. Never have!


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Old 09-20-2018, 11:03 PM #14 (permalink)
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Default Re: Als fear Got me worried sick

many things besides coffee contain caffeine ...
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Old 09-24-2018, 03:14 AM #15 (permalink)
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Default Re: Als fear Got me worried sick

Just an update.

Back to neuro on the 9th of October. I will be assisting on EMG and strength testing. Just noticed today that my legs all the way up fasiculate continuously no breaks really between them and when stretched or strained get worse and easier to see. I really am on the verge of a breakdown of some sorts. My arms shake visibly when doing something as simple as using the mouse for the computer. Trying to stay positive, I give it to God everyday, but I think you just know when it is more than just stress and anxIety. But I am still hoping it is not. Dexterity definitely a problem as is weakness in shoulders and thumbs. Doing simple tasks seem to hurt the base of my thumbs.

I will keep you posted on how my neuro appointment goes.

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