M28 - Fasciculations, myoclonus, postnasal drip and slurred speech, MRI-findings

lifelover

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Hi all!

I am 28 years old man from Finland. Father to 0,3 and 5 years old kids, and husband to my beloved wife.

In advance I want to say how sorry I feel for you everyone, especially you with diagnosed MNDs and to those who are taking care of ones. You are in my heart nowadays every moment. I dont want to be understood wrong, neither I dont want to argue with anyone. If I say something that is hurting someone, tell me, I dont know how to talk about this. My english isnt so good either, so that is making this even more difficult.

My symptoms has started with progressive general fatique over 2 years. I've complained about it to my wife now and then. Still, it hasnt bothered me too much to not to be able to do my job or any other tasks. It has just been kinda like a feeling that I am getting a flu, but it never came.

In december 2021 I got covid-19. My symptoms were little fever, cough, sore throat, loss of taste and smell, dizziness and so on. Nothing really worrying appeared. It lasted around 8-10 days.

In january, I got three scenes of sudden vertigo / dizziness with light heart palpitations or extra heartbeats. Those all happened during relaxed moment, playing PS5, sitting in my office, or going to sleep and drinking one last sip of water in kitchen. I called ambulance 2 times, both of those times they examined EKG, listened my heart, but everything was completely normal.

After that I got a rash called Pityriasis Rosea. I've never experienced rash, so that was really new to me. Same time I was feeling really fatiqued and "flu-like".

In the end of January one evening, I got a feeling of like my brains was going to explode, no pain, but just a one kind of a brain rush and feeling like my head was too full of thoughts. I got a really band anxiety attack at the same time. Fearing that I am going to lose my mind, and I was crying and holding my wifes hand. Like I dropped straight down to the very bottom of my mental health.

After that experience in one morning, maybe February, I noticed that the ball of my feet in my left side was having electric-current like feeling when I walked. That was on for 3-4 days, went off, came back again and went off, etc.. (Now it has almost stopped completely, I havent had it for weeks now.) Then I started to notice that my legs were buzzing and vibrating when I layed down at night to my bed. It was like there were soda water in my blood.

At that time I started having tightness in my throat, and urge to burp. The feeling fluctuated, was on and off, but sometimes it got really intense, like making me feel like I cant breathe. It lasted pretty much to september, but after that I havent got it.


One morning I was scared completely. I was having breakfast and tried to take a sip of water. I couldnt swallow. It just didnt work. It lasted about one minute, and after that I managed to drink the water but I needed to adjust my swallowing technique in order to manage to do that. After that for 1,5 months, everytime I swallowed someting sticky, like Protein-quark, I got heart palpitations followed by my swallow. I dont know now if those were really fasciculations in my throat/upper chest area.

That time I started to get numbness in my left side of upper lip. It was also on-off typed, lasted 5 months. Nowadays I dont get it anymore.

I started having electric-current like feelings in my body when I turned my head to left or right. I started noticing that the buzzing and vibrating started to become fasciculations all over my body.

In march/april, my left hand started to feel strange. It wasnt numb or really weak, but it started to feel a bit "off". Like it was empty. Soon after that, my left leg developed the same feeling. In the beginning those feelings would come and go in for week or two, but now it is permanent.

Then I desided to go for doctor. We made all the blood tests, ultrasound of heart, x-ray of my upper chest. Everything normal, except my thyroid levels were high, but they came back normal in one month without medication. Tested for celiac also, negative. After all the examines, doctor tested my reflexes and noted that all my reflexes were absent or really really low. Then he sent me to neurologist.

Neurologist tested reflexes, babinski, touch-my-nose, walking on my toes and basic stuff like that. All was good but reflexes absent.

We made brain MRI, and there were 10-14 non-spesific frontal white matter T2 hyperintensities found in my brain, and one 4mm long in T2 flair imaging subcortical. Neurologist said that those can be anything, from a strong infection, little vessel problems, or demyelination of nerves.

I was sent to CSF, and no signs of nerve inflammation were found ,and no signs of MS-disease.

I had ENMG, everything ok, but we didnt test bulbar. Distal latencies in left arm little bit long, but my hand were reeeaally cold so that might explain that.

My symptoms today:

- I am fatiqued. My muscles get tired really easily when doing tasks, like writing this text. Washing my hair in shower, my elbows get tired.

- I am having fasciculations in my throat, in my cheek, quads, calves, arch of the foot, abdominal, back, shoulders.. you name it. Sometimes those are more frequent, for example now I dont have them so much, but still every minute some part is twitching.

- My speech... this is the most worrying thing which is reminding me every second of this thing going on. My speech is slurred. It is hard for me to pronounce "R" (in finland the R is not similar than in english, it is more deeper vibrated) and other consonants especially when tired or slept bad. But even after good sleep, i slur my words. Speech is not the same it used to be. There is still moments (which are gettin rarer day by day) that my speech is pretty much normal.

-Swallowing. My swallowing is impaired too. I find it hard to swallow everything normally. Bread is getting stuck in my throat, I need to swallow 2-3 times to get it down. Water is going down yes, but often going to my nasal tunnels, and staying in the way of my airways. The feeling is like laying in dentist, and the nurse dont use the vacuum properly, and you have that pleghm in your throat. But now i got it when I sit and I cant swallow it away.

- Night/sleeping problems. I dont fall asleep because all the problems I have now in my body. I get those "hypnic jerks" every night I go to sleep. But nowadays those are diffenrent than they used to be. Now my jaw is shutting just before I fall asleep and it is waking me up. Every-***beep-time. It might happen 10-20 times before I actually can sleep.

-My fingers are getting really stiff when cold, or when in a room which has AC. My job is office job, and here is AC and my fingers are really really stiff and not functioning well.

- My toes are wiggling involuntarily, and so does my thumb. The muscle of thumb is twitchin and making the thumb to move.

- Symptoms are pretty much on the left side of my body. More twitching on that side too.

- Muscles in the side of my left leg is "wiggling" when I flex my foot. For example if I sit on sofa, and press my left foot to ground while my knee is in 90 degree angle, side muscles are moving like "northern lights" if you have ever seen those.

- I have postnasal drip continously nowadays. Lasted for 2 months. My soft palate is asymmetrical. When I say "AAA", it lifts, but it highest point moves little bit to right side.

-My cheek muscle on left side, which has had a lot of twitchinh, is dented. Even my wife noted me for it one day.


Lots of things, and lots of things I forgot to write, but anyways. I am really sad because all of this.

I know this is hard to read and to put together, but all I can think myself is ALS. With the other symptoms I could lie to myself, and convince myself that I have some kinf of Long-Covid thing going on, but the speech problems are making me forget about lying to myself.
 

Bestfriends14

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Absolutely nothing points to ALS. Please read the sticky about long haul covid. Your post is nearly identical to others who have come here, with symptoms similar to yours, who also had covid. Long haul covid can cause all the symptoms you have listed and those issues can last for months. Again, please read the stickies at the top of the CIHALS sub forum.

I hope your symptoms go away soon. Take good care
 

Nikki J

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Please work with your doctor. Long covid can indeed wreak havoc with your body. Honestly you telling yourself it can only be ALS is a lie to yourself not the other way around
 

lifelover

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Thank you Bestfriends and Nikki for replying. Ive been lurking for a good 4 months now, and you two are like superstars to me, and it feels amazing to get reply from you.

So, you would say to me that my symptoms would not point to ALS? I have been living in a constant fear for this whole time.

In december 13th I have my second EMG. I will need to ask them then to test bulbar region also.
 

lgelb

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I'll third the others. You are not describing ALS. That doesn't mean it's long Covid, but that's a plausible possibility.

Sometimes it is best to do things that make the symptoms better, when we cannot be sure what is causing them. You can drink juice or non-dairy smoothies instead of water, for example. But since you have issues with both swallowing and speaking as you perceive it, you might see a speech pathologist to make sure you do not have another cause (not ALS) for this.

You also have a lot of understandable anxiety that can affect your physical wellbeing, so it might be worth discussing with a counselor skilled in the mind/body connection.

Best,
Laurie
 

lifelover

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Thank you all for replies! If I ever get a diagnosis, I promise to post it here. I´ve noticed that there is tons of users which are very active until they suddenly disappear, right before the possible diagnosis. That leaves a black hole in our hypochondriac minds...
 

affected

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Not coming back actually means they never got diagnosed with ALS. The very tiny amount that start in this section join the forum once diagnosed.
You normally find too, that those people had worrying clinical exams and we assisted them through to diagnosis.
Try not to hang out here any more, it's not good for you, so control the few things you can.
 

lifelover

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IMG_20221214_141729__01.jpg

Here is my enmg from october. My new appoitment was cancelled and moved forward.

So this is super clean in the EMG side, as I already knew. Only thing concerning is the "prolonged median motor nerve distal latencies" which Ive understood appear in a decent amount of PALSes ncs results.
 
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Nikki J

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Prolonged latency in ncs is a non specific findings with many more common causes. All the papers I have seen relating this to ALS looked at patients who had ALS and thus also had extremely abnormal emgs which you did not. Further those with ALS and prolonged latency were rapid progressing Rapid progressing ALS is diagnosed quickly and many of those PALS are dead with a year of onset

please discuss your concerns with your doctors
 

lifelover

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Thank you Nikki for you fast and professional reply, again. You truly are a gift to everybody in this server.
 

lifelover

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Hi again. So as I told, my EMG was moved forward to January.


Last friday I had an appointment with new neuro, I dont know if shes mnd specialized or not. She tested my balance, tap to nose etc. Reflexes were completely absent, no movement in knee, ankle, arm, or any other place. Babinski was normal. Strenght is good, I am still very "strong", even though my left side is, in certain movements, much weaker than my right side. She also did look my soft palate rise and said straight away that it is completely normal, which is reeeally good sign because of my speech and swallowing (note, 99% solid swallowing problem, and thinnest liquid are the easiest to swallow. Yoghurt and quark is quite difficult, but for example rye bread, typical bread in finland, is hard to swallow. The small bits of food are staying in the top of the back of my mouth, and I need to flush them away with water.

My speech is unfortunately at the point that I dont want to speak very much anymore. I can speak pretty much ok, but it requires much more effort to articulate clearly and hit consonants. Nobody has noted me of my speech, but I have always been the guy in my friend groups that has the most jokes and talks fastest & most. I think friends have noticed that I am acting different because of that. It still fluids a bit during a day, but in the big picture it is progressively going south. In the mornings it is bad, during the day usually better and after 8pm it goes worse again. The control of my pitch and tone is so worse that yesterday I went to chruch with my wife and 6-months old daughter to sing christmas songs, I couldnt sing. Like I needed to sing in very high pitch, but not in my "own" tone. I cant sing with low tone at all, like I cant get nearly as low as I have been getting before. And I am decent singer, with history of non-professional choirs and lots of church singing. My face has sunken more unfortunately, and my left side of the face especially is becoming more "skull"-like, and faciall appearance is "flatter" than few years ago. I have been handsome guy with good jawline and masculine face, I hate to see it is vanishing off day-by-day.


The pink toe and ring toe of my left foot has lost power to contract down. Of course those toes are not strong in anybody, but in my right foot I can squeeze them down hard while I squeeze all my toes down, but in my left foot if I resist those with tiniest force with my hand, they stay up and it hurts a bit in the sole of my foot while doing this. I tried to mention this to my neuro on friday, but she only tested the strengt which controls my foot movement up and down, which is strong in both feet. Those two toes are the ones which have twitched and "wiggled" the most on their own, which has been little bit painful. The twitching of those toes has ended 2-3 weeks go, and last week I noticed that I cant move them up&down. I can still flex my toes apart in left foot, like widen those. But I think that that is causing the problems with my balance on left foot. If I lean forward to catch something from the floor, I am now falling forward.

I am not basically looking for final anwers but rather using this as my diary, as I find this really reliving at this moment when I am waiting for results and possible diagnosis of some disease.

I still think that I am really young to get MND at 28-old, I have cleanest EMG, and also some non als symptoms, but the speech, loss of reflexes, prolonged latencies, loss of weight, sagging clothes, and more loose on the left side (same jeans wich have fitted for the last 8 years), swallowing and still twitching but far less than in the worst moments, brings my thought always back to it.

I wish you all well! I will get back to this whenever I got something worth of sharing. I hope my thread stays open, because I want to be as open as I can so whatever the end source of my symptoms is, the complete story will help people with similar things going on.

Best regards, J
 

affected

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You can write a diary in a google document if you want to just make note of this to keep a record for yourself.
You have truly been cleared and keeping an account here is not the best way forwards.
Nothing suggests ALS. Not your symptom reports, and not your clinical examination and tests.
I'm so pleased for you - I hope your doctor can help you find what is going on. Letting go of ALS will allow that to happen better.
 

lifelover

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Thank you Affected for your reply. And I really need that "aggressive" pushing to lean somewhere else than ALS.
 
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