Stiff ankle, fascs (in tongue also) and awkward fingers

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Gerbera

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Oct 2, 2019
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13
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Learn about ALS
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00/0000
Country
SW
State
ST
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Göteborg
About 1,5 months ago I experienced, during a course of week or two, severe cramping of my toes, feet and calves when exercising. At the same time there was some awkwardness in my fingers and facial fasciculations. My ankle and calf (left, also hand probs on left) were stiff and especially going down the stairs I felt it. I got tension neck diagnosis and thyroid was ok also when consulting a doctor.

Now I have fasciculations in my tongue, and one day when I was about to talk, at the same time one fired and felt like a fish was trying to get out of my mouth with fury. Also my legs; everyting from mid calf down bubbles. Then more sporadically on my back, abdomen etc. I've always been prone to them but these are not the usual places (I had years and years one appearing in my bum. Lovely..)

One of the most striking things was going to the gym, and I did treadmill and legpress, stuff I would normally do. When walking back home uphill, I had to lift my left leg so weirdly, like from knee or hip to manage it to move.

During this all I have not experienced any pain. Also, I have a swallowing problem; started somewhere in the spring I think. Weird, small stuff like blueberries or candies stay quite up my throat when I swallow them. I don't choke or panic, i just couchg it back up and swallow again, it sits almost "nicely" where it is, no discomfort, but not moving. This does not happen too often and has not got worse. I'm having my hopes up it's the tension neck, this doctor who told me it is said it is common in that.

I would be very happy of your input or thoughts in this, as you've seen a lot. I'm not sure what's wrong with me, have not really locked myself with the idea of als, but something feels off.
 
Hi there-

Have a read here Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms! to reassure yourself about twitching, etc. They really are a very common thing and are not indicative of anything unless accompanied by a specific pattern of symptoms that only a doctor can really examine you for.

It sounds like you've been to see a doctor already and they've tried to reassure you but you are not convinced. Are you following up with them to get to the bottom of your concerns? What are you doing to deal with the tension the doctor indicates you may have?
 
Hi and thank you for the reply! I have read the post and it was very useful indeed.

I am not quite sure what you mean by "reassurance" and "not convinced". I had nothing in mind when going to the doctor the first time and thus needed no reassurance. I was very happy with my visit and think doctor did a good job. I have stiff neck, which I myself brought up as a reason. He agreed and actually is specialist in that so we both we're probably happy with each other at the end. I am on a routine for the tension and having massages. Very nice btw, can recommend to anyone.

He didn't do that many different examinations on (cheking now from my personal file) me, I touched my nose, walked on heels and toes and then he put me to touch my leg with the opposite leg, five times. I have apparently overactive reflex on the stiff ankle which I guess can happen. That's it, apart from the blood test.

I'm not sure what else to say now. A bit intimidated to ask any further questions, am I still allowed? If somebody feels like addressing my initial concerns with the stiff ankle and swallowing problems I'd be happy. I don't have to mention the fasciculations anymore if it annoys somebody, like I said I've always had them, no one needs to tell me they can be normal.
 
A stiff ankle doesn’t sound like ALS onset to me nor does your description of swallowing difficulty. Also ALS will start in one area and slowly spread not be in multiple areas before it has declared itself in one.

I hope that helps a bit. If you are still experiencing that post gym gait issue you should get it checked

Good luck
 
Hi Nikki, yes it helps a lot, thank you. That would have been actually one question I forgot from the original post, is it possible to wear out the muscles in als so that they became that... alien? it had all sensory feelings but just complately out of energy, I've been avoiding gym after that... I didn't think that much of it because I gained the energy back and only the stiffness remained. Gaining back something is not really als, is it?

That kind of reaction seems to be more related to MS, absolute fatigue after excercise.

As a side note, I'm not easily startled or nor do I get anxious of health things. I just want to know what's going on. Sorry if I've been too blunt or something, not my first language this, not even second. I'm also hoping that these kind of posts help other people, especially when I hopefully find the real culprit here and as you, like I tried to say in the first post poorly, have seen so much maybe I don't have to wonder too long or to wrong directions as I would without your help.
 
You’re correct that ALS symptoms do not come and go. ALS can be associated with fatigue after exercise, but that is a very non-specific symptom. Hundreds of many more common conditions can cause fatigue after exercise.

My muscles have never felt alien. They just don’t work. My brain tells them to move, and they don’t.

I don’t see ALS in your post at all. I recommend you keep working with your doctor and also consider physiotherapy to facilitate your return to the gym.
 
I'm back with some concerns and not sure if I should bother my doctor again. I've had not had any further problems with any of the extremities anymore, however the swallowing problem persits and feels a bit worse. As I previously described, the food "sits" nicely aftef swallowing somewhere in my throat squeezed somewhere and I am able to couchg it up back and swallow when that happens.

Recently I've felt like the food doesn't go as down to its place where it used to stay, it stays just above, loose. It feels I'm not able to complete the swallow as I did before. I have no control over the piece of food... When I go to check from the mirrow if I can actually detect the food back my throat, I can't. I went to check as it felt quite up. If I bring it up to my mouth I manage to swallow it better if it goes down from the side of my throat. The middle bit is problematic.

Another problem I've had for weeks now and only now realised could be related is thick saliva/mucus pooling under my upper lip and between my front teeth. If I open my mouth without "collecting" it away carefully with my tongue (it's sticky and there's a lot of it), I have sticky saliva bars between my upper and front theet . My partner has made a note of this and it's getting a bit hard at work because I can't speak spontaneously. I have never heard of saliva problems in front of the mouth nor that saliva would be a problem with so minor level of problems with swallowing. I can say this is not a minor problem and I haven't had anything like this before.

I would however like to hear your thoughts. I do keep having regular fasciculations all over my tongue. I have told myself they are nothing to worry. I've been doing physio and massages. I have no pains. I've never had any neck, back or head aches even though this should be due to stiff muscles. I feel fine otherwise.
 
When ALS affects the bulbar region, the first sign tends to be slurred speech that others notice.
What you describe doesn’t sound anything like ALS. There are many, many other reasons why you might have difficulty swallowing. I would start by mentioning it to your primary care physician. You might ultimately need to get it checked out by an ENT.
 
Thank you Karen for your reply.

I have sent an update to my neuro though and waiting for a response. Let's see if he suggests a visit to ENT. I'm not going to lie, before I was slightly concerned but thought it's probably something or nothing. Now I don't really see what other options there are as I have a constantly flickering tongue and progressive dysphagia. Before I felt my throat was tight around the piece of food stuck and could bring it up, now it just is there somewhere and swallowing and swallowing and swallowing doesn't move the food at all. Before I felt it moving up and down with the swallow. Now it just.. floates?

I know slurring speech is the most common manifestation of bulbar onset als but I was able to find a person on this forum with the first symptom being difficulty with swallowing solids. Can I really anymore with my symptoms fall into the category of meaningless fasciculations without athropy?

Sorry for being back here again but I have absolutely no one to talk this about. My spouse has a serious condition and is not able to handle the distress my worries would cause. I really like my neuro though and I feel I can discuss this through with him as soon as he gets back to me.
 
There’s really not much more we can tell you. Discussion with your neurologist will be your best bet.
 
Neuro told me over the phone that these are still typical symptoms for tension neck. I really wan't to trust him on this and didn't question his evaluation.

However, I've not found a single incident in the internet where tension neck has been the cause of tongue fasciculations and dysphagia. But he just wasn't a single bit concerned or asked any details. I was expecting he would have wanted to see me at least, I know now that he didn't test me for babinski etc, no one has ever looked down my throath...

I don't want to dwell on this too much with people who actually suffer this horrible condition but maybe somebody finds useful to know that dysphagia and tongue fasciculations might be caused by tension neck...
 
As an update, I've been directed for head MRI and swallowing tests in January.

I found a couple of member posts here that discribe similar symptoms of swallowing difficulty, "blind spot" in throat for solids, if the piece of food goes to that spot it just floates without control even though they would swallow and swallow. Together with twitching of my tongue and throat it wasn't a happy discovery. This week all of the sudden my hand started shaking without control when I hold my phone up for 5 minutes. At first I didn't even understand to be concerned, was just amused (I've been able to put my concerns aside pretty good) but now I have an achy muscle on my arm as a reminder or that weird incident.

I've been trying to be alerted if I would have sensory symptoms, and I get occasional "needle to finger- or toetips" pain, but those don't really last more than a second or two. Every time I feel "buzzing" sensation in my legs closer look discovers it's just one more fasciculation, just in such a small muscle or more inside, that it feels like buzz. But no.

MRI and swallowing tests were ordered by ENT doc.

Has anyone ever heard of feeling that windpipe has some weird pressure in it and then it kinda dislocates a bit? ENT doc denied the possibility of windpipe movement in the first place (in any condition) but that's how it has felt occasionally. If I move really quick, there's this dislocation movement in front of my throat. Very uncomfotable. Would it be possible that the muscles are too tight and also weakened so the windpipe is feeling like this? ENT suspected of involuntary reflex (a kind of fasc also) of swallowing, but I don't know, wouldn't swallowing involuntary still feel like... swallowing?

Just to anticipate the first "stop trying to convince that you have als" -comment: I'm trying to convince myself I dont have it. Something is going on with my swallowing and throat, and no examinable-by-eye reason was found.
 
Here's the thing, Gerbera. You may think you are trying to convince yourself that you do not have ALS, but you actually are because you continue to try to find reasons why your "symptoms" are ALS, instead of focusing on what else could be causing your issues.

You have no ALS symptoms whatsoever and you have been told this repeatedly, yet here you are asking more questions about what is going on. In one of your posts you said "I dont want to continue to bother my doctor". Really? Yet you have no issue bothering terminally ill folks? Really and truly, this is not a general health forum. You really, really do not have ALS symptoms. Please be grateful for that and be grateful that you will have a healthy Christmas and many more to come with your loved ones.

Let this obsession with ALS go. Take good care and try to enjoy the holidays. You are the only one to ensure you do.
 
You don’t describe ALS at all. Please keep working with your doctors. There is really nothing more people here can help you with. I’m closing this thread. Please do not start another.
 
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