Old 01-20-2019, 08:53 AM #1
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Default Very scared - seems more like ALS each day

Hi All,

First I wanted to say thank you to all of the folks who take the time to read these posts and share their opinions. I've been reading on these forums for a little while now and figured it was finally time to share my concerns...

Before I go into detail about my story, I'll quickly summarize my symptoms for anyone that wants a short version: I'm a 27 year old male who, for the last few months, has had diffuse body twitching, primarily in the legs and almost constant in both feet, especially in 1 or 2 particular locations that seems to be triggered by standing. Both legs feel constantly heavy and weak each day, and my ankle muscles/tendons feel like they need to "adjust" to keep me in place while standing still. I have noticed muscles that tremble with very little movement in my shoulders, and I have a tremor in both arms. But, I can still walk on my toes and heels, and my although I feel slowed down. What worries me the most is my saliva and swallowing - over the last 1-2 weeks, I feel like I've had excess saliva, constantly feel like I need to swallow, and sometimes I feel like I'm swallowing constant thick mucus. My throat feels tight around 4-5 pm each day and sometimes painful, and I've needed to swallow repeatedly to get food down on occasion. I've also noticed twitching when I look at my tongue, that I can't feel, but I don't seem to have any speech problems or problems moving the tongue.

Anyway, this is a longer version for anyone who is interested...

Last April (04/201, I started feeling a very occasional, very localized twitching around my left shin. That quickly went away, but I developed an intense, brief, come-and-go pain around that area for the next 3 months, that happened almost every day, sometimes throughout the day. For background, I'm a student in graduate school and have been under a lot of stress, but I immediately feared the worst (bone cancer, etc). Around July, those symptoms disappeared, X-rays were negative, and I felt fine. I have no idea if this relates to my current symptoms or why I'm worried about ALS, but because it happened in the legs I figured it was worth sharing.

Around September, that pain returned for another 2-3 months or so. But that's really not what worries me - in October, I noticed twitching all over both legs. I noticed it mostly when I was sitting or lying down, but sometimes it could feel like a fireworks show going off in my legs. I felt the twitching, but could not see it, and if I moved the leg to try to observe a fasciculation, they would temporarily stop. I noticed the twitching every few days or so in October, but by November/December, they were constant in the legs. I also started noticing them basically anywhere - in the arms, shoulders, thighs, legs, feet, ankles, hands, lips, cheeks, eyelids, even sometimes on my ears and abdomen. In those places, they mostly come and go (I have "runs" of twitches where they hop around), but now they are basically constant in both feet and ankles. Every day, almost all throughout the day, I feel them in the feet, ankles, and sometimes lower legs. Sometimes it feels like a buzzing in the feet, sometimes worms crawling all over my feet, sometimes actual thumbing twitches. What really worries me is there is one spot in particular in my left foot/ankle, right at the base of the ankle, which has big thumping twitches from time to time - but those twitches are usually brought ON by standing. If I stand for even 5 minutes, I feel twitching in that spot. If I walk and then I stop walking, I feel twitching in that spot. Because it's so localized, and brought on with standing/activity, I fear it's something more worrisome than BFS.

What worries me even more is that I've felt progressive weakness, mostly in the legs. While home over the holidays in late December, I felt like I couldn't stand in one place for more than a few minutes before my legs got fatigued. They constantly feel weak, especially when I stand on them, like I'm standing on jelly legs or sometimes like lead pipes. When I try to stand still, my ankle balance seems off, almost as if the muscles/tendons are in a tug of war trying to keep me balanced. The fact that the feet are usually twitching, too, during this time does NOT help.

As far as leg pains, I still have them, but they're different. Now they feel like aching soreness that can migrate to place to place, primarily in my legs. It's not quite a "true cramp" but it's almost like a cramp is about to come on. When I get those varies, sometimes when I'm at rest, and they migrate around - sometimes in the thighs, sometimes around the shins and calves, sometimes in my biceps and shoulders in my arms.

I've also noticed weakness and trembling in both arms. I do have a baseline tremor in my hands that I've always had, but it's seemed to have gotten worse. If I hold my arms out, the hands shake. If I hold my phone up for too long or try to write on a whiteboard/chalkboard, I feel a burning, fatigued feeling in my upper arm / shoulder that I've NEVER felt before, within even a minute.

What worries me the most is my swallowing. For the last few months, I've felt a "post-nasal drip" sensation of having to swallow thick mucus. But it seems to have gotten WORSE and progressing. My fear for bulbar ALS started when I looked in the mirror one day and noticed twitching on my tongue. The sides of my tongue tremble, but I'm talking about twitching on the center of my tongue, like the skin is being pinched in one spot, and then another spot. I can't feel them unless I'm looking at my tongue in the mirror, and sometimes they seem worse than others. I reassured myself thinking "I can still talk and swallow fine", but the swallowing has gotten WORSE. Over the last 1-2 weeks, I've felt excessive saliva in my mouth, and a need to constantly swallow it. I feel like if I don't consciously swallow it, I won't. To make matters worse, sometimes I feel a thick mucus in my throat that I have to constantly swallow and clear. It seems to be hurting my vocal cords, and there's a spot around my Adam's apple that - nearly every day now - tightens up and hurts. And, I have been having problems swallowing solid foods. I've noticed it takes more focus and difficulty to get the food to go down, and sometimes I even need to swallow multiple times to get something to go down. That all started this week, and has never happened to me before, and part of the reason I'm posting here today.

To me, this seems like it could be symptoms of ALS across my body, from my feet to my ankles to my legs to my arms and now throat/mouth. The only reassuring things that I'm holding onto as this possibly being benign: I can still toe walk and heel walk, I can still walk without much difficulty (although I "think" I'm constantly dragging my toes...), I can still talk fine (even if sometimes I think my voice is hoarse, or sometimes I'm mispronouncing/stumbling over my words), I can still move my tongue in all directions. I have NO idea about atrophy, I've scanned my body and "thought" it could be in places here or there, especially in my feet and ankles. But I keep telling myself that I've never really looked for it before, and what I could be seeing was always there.

Anyway, I've seen my PCP, who noted benign possibilities but said we have to keep ALS on the list (which freaked me out pretty bad). He did extensive bloodwork which was all negative. I have an appointment with the neurologist next Tuesday, and I will see where everything goes from there. I just have so much pent up anxiety about this, I really needed to share my story and hear anyone's opinions on this. Is there any way this could be BFS with cramping/pain, and not ALS? I seem to have almost all of the ALS symptoms, which seem to be progressing over the last few months. Is this how ALS can present? I am some one that's very much prone to anxiety, especially health anxiety, so I'm hoping this is all a bad manifestation of BFS. But with the recent "bulbar-like" symptoms I've been finding, I just can't reassure myself anymore. It's going to be a long week waiting for the neurologist, and probably even longer for any results.

Thanks for your time.
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Old 01-20-2019, 09:15 AM #2
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Default Re: Very scared - seems more like ALS each day

It's most likely either 1. Nothing or 2. BFS. There is a very rare version of BFS with cramping.

My first guess would be that it's nothing.
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Old 01-20-2019, 10:49 AM #3
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Default Re: Very scared - seems more like ALS each day

You are describing a lot of sensations here, sensations are not what ALS is about. You don’t “feel” weak, a part of your body simply fails to work, and you can’t even feel anything unusual about it. Here are a few things I have read here and one my husband experienced who were diagnosed with ALS:

“He would look at his hands and wonder why they did not work”

“She kneeled to get a book from a lower shelf and her ankle gave out”

“What’s going on? I can’t grip this at all”.

No feeling weak, just failing parts. In my opinion, no one who is not at the very least a neurologist, and much preferably a Neuro Muscular Specialist should even be introducing the possibility of ALS. Frankly, the majority don’t know enough about the disease to bring that up.

I am not any sort of a Doctor, but I have learned way more than I ever wanted to know about this wretched thing and it does not sound to me at all as if you have it. If you spend any time on here at all, make it time to read the stickies and be at peace, this is not your problem.
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Old 01-27-2019, 01:06 PM #4
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Default Re: Very scared - seems more like ALS each day

Hello,

Thank you all so much for your input, I really do appreciate it. I have a few more things to add, and I just wanted to get this out there as well. Sometimes when I walk, it feels as though my toes are hitting the ground first before the foot kicks out. And sometimes when I’m walking up the stairs, it feels as though a foot can “catch” on the step. Neither has made me trip, but it’s something I’ve noticed from time to time.

Also, I’ve noticed an increase in my muscle pain, particularly in the legs, after exercise. I tried running and going back to the gym last week and I felt slow (although I chalked that up to being out of shape), but now the “muscle pain” is back in the same locations (along the shins, by the knees), but it’s not a typical “sore after exercising” kind of pain.

Also, sometimes my twitching feels like it’s focused in the areas where the muscles are hurting, but the 2 don’t happen at the same time.

Should these things raise any red flags?

Thank you - I am praying my appointment goes well with the neurologist this week!
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Old 01-27-2019, 09:24 PM #5
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Default Re: Very scared - seems more like ALS each day

Sounds like you have a lot to discuss with your neurologist. Please let us know how it goes.
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Old 01-27-2019, 09:44 PM #6
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Default Re: Very scared - seems more like ALS each day

Copy and print your posts. Take them with you to your Neuro appointment

let him/her read them so you don't forget anything you have labored us with.

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Old 01-28-2019, 10:56 AM #7
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Default Re: Very scared - seems more like ALS each day

Please let us know how your appointment goes- no posting till after your visit with the doctor.
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Old 01-29-2019, 12:57 PM #8
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Default Re: Very scared - seems more like ALS each day

Hello all,

As a quick update, I was seen by the neurologist today. She said that she “doesn’t know what’s going on with me.” She noted that, while twitches can be benign, she was concerned about the muscle pain / cramping. So, I have an EMG and nerve conduction study scheduled for next week.

She did a very quick exam, basically looking for quick strength, Babinski, reflexes, and clonus. All negative. She said the exam was “reassuring” but that we would need to look at the EMG before ruling out motor neuron disease.
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Old 01-29-2019, 04:28 PM #9
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Default Re: Very scared - seems more like ALS each day

I reread your post. Sounds mostly like twitching, cramps, aching, and feeling weak but with normal strength and reflexes on exam.

That is very reassuring. The purpose of the EMG would be to 100% rule out ALS and ease your mind. But ALS would be extremely unlikely with a normal neuro exam. Cramp-fasciculation syndrome would be far more likely.

So I seriously wouldn’t lose sleep over it and wish you luck on finding fun things to do in the meantime to get your mind of of it. Hopefully you can put this behind you very soon.
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Old 01-29-2019, 05:45 PM #10
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Default Re: Very scared - seems more like ALS each day

Thank you, Karen! Unfortunately (or maybe fortunately?) I have a big licensing exam coming up in March, which will be occupying most of my time, so not a whole lot of fun to look forward to right now. I will try not to stress too much waiting for the EMG, though. I hope to put all of this past me soon.
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Old 02-07-2019, 09:57 AM #11
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Default Re: Very scared - seems more like ALS each day

Hello All,

I went in for my EMG / nerve conduction study this morning. Wonderful news! While I don’t have the report, the physician running the EMG (who seems to have many years of experience and really knows his stuff) said that my EMG could be a “case report” for a normal EMG. I had expressed that I was worried about ALS, but he said based on my EMG I didn’t have to worry about that and could “cross it off my list.” For anyone reading this who hasn’t had their EMG yet, I had my left leg and left arm tested. I was a little concerned during the procedure, because he only did one side and didn’t put the needles in my ankles/feet, where my worst symptoms are. But he said if it was motor neuron disease, it would have shown “anywhere”, and there was no need to check both sides. He also said there weren’t any signs of fasciculations or fibrillations, and no evidence of reinervation. Again I don’t have the report yet, but I trust what he said.

No explanations for the muscle aches or leg weakness, but I will happily take not knowing that at this point. I will most likely be leaving this forum now for the sake of my mental health / so that I can stop worrying, but thank you all so, so much for your help. You have helped guide me through this very scary time, and I appreciate everyone who took the time to respond to me. God bless you all.
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Old 02-07-2019, 10:13 AM #12
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Default Re: Very scared - seems more like ALS each day

Thank you for reporting back. Congratulations. Have a long and happy life and best of luck for your upcoming exam
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