Symptoms going on for 6 months

[fred12378]

Hello everybody,

First of all I am very glad I can post on this forum where I find very clear and compassionate answers regarding ALS.


I am a 35 years old male from France, and I am seeking for some answers I hope you can help me with. (also, forgive my very imperfect english).

Here is my background : Father of 2 little girls, married, no known health condition, nothing to really worry about. Vaccinated 3 times (Pfizer) against Covid, last time 2022.01. I had Covid confirmed 3 times after that in 14 months, and in january 2022 I had vaccine and Covid at the same time without knowing... (Positive PCR following the vaccine on next day...).
I am in the military, always been very active and sportly (especially running, swimming, walking, and fitness).

I am experiencing weird symptoms for about 6 months, for which I am getting very worried about.
In october of 22, I started having chest pain. Something weird, couldn't say if this was in the muscles, the lungs, the articulations. Centered on and behind sternum.
Doctor thought of acid reflux and gave me PPIs which didn't help. It went on for 2 months and I had Thoracic Radiography as well as thoracic scanner and everything was fine on it. Gastroscopy also was just plain normal.

In december, I had flu for 10 days and then, on Christmas day, I was for the third time Covid positive (thanks mum). Didn't suffer much, I was just feeling very old and tired and a little bit of chest compression but it was ok.
Ten days after day I had surinfection and took antibiotics.

But most of it starts after that.
Beginning of february (about 6 to 7 weeks after Covid) I started having muscle numbness and weakening especially in the upper body.
I wasn't worried about it, and I was just telling myself that's Covid weird after-stuff going on.
But it didn't go away, it only got worse and other things were adding up to this : unprecedented fatigue, muscle twitching, at first discreet, but then it got worse, especially in upper arms, thighs, calf, abs, and deltoids. I lost 11 Ibs without eating any different.

I told myself that's just again post viral symptoms and that's fine. Had a clean blood test by my GP who wasn't convinced that's long Covid, and started pointing something neurological since it wasn't made of ups and downs, but just downs and getting worse.

I saw a neurologist end of february who performed all the usual tests and told me she noticed visually and when measuring left arm and right leg amyotrophy, as well as left hand,. and suggested and EMG.

Had the EMG a few days after that, beginning of march, which was normal. She only noticed 1 fasciculation during the exam in the left leg. Other than that normal.

Since then, things have been getting worse. I have very important muscle pain, which wakes me up at night, especially in the thighs and shoulders.
I am not able not carry my kids anymore for more than a few seconds, and I can't hold something over my head. My arms gets tired very quickly.
I can't do sports any more. I was a runner, now after 1 mile I feel 90 years old.
I have trouble breathing when walking too fast. Hand gets tired very quickly writing with pen or buttoning shirt.
When I grip something, my fingers stay stiff.
I am a piano player and I am not able to play like before any more.
I have constant twitching all over the body except for extremities, especially at rest.

I saw another neurologist 2 weeks ago. She said that my exam was quite normal except for extension of the reflexogen zone in upper arms, and bad tandem walking with closed eyes.
She suggested for the first time ALS, which I didn't even know about, and told me she couldn't say if this was just the beginning of something getting worse or if it was the rest of Guillain Barre syndrome I had after my last covid of december. She said it starts 4 weeks after infection or vaccine, but the numbers don't really match (here 6 to 7 weeks) and I am not convinced of it.
She also wrote on the report, that it could be "post covid myelitis" and I had to do Spine MRI to check on this. She was very elusive about ALS in the end and said she didn't "think" it looks like it but nothing is definitive.
I still wasn't able to get an appointment and I have to wait about 1 month for it.

The question here is this : with all this info, could this point to ALS ?
Considering my young age, could this start slowly and being difficult to diagnose in the beginning ? I have read of many cases of young persons having normal EMG and 2 or 3 years later, being diagnosed with ALS.
Does a clean EMG in march rule out ALS or is it still possible ? How could I explain muscle pain and enormous fatigue and all the twitching going on ? And the leg and arm atrophy ?

Thanks a lot for your help and your opinions, and thank you for contributing for this wonderful forum. I hope you all take care.


Fred

 

[lgelb]

I'm sorry for your troubles. It doesn't sound like ALS to me, even before you mention the clean EMG. There are many possibilities. I agree that a spine MRI is a good idea. The pain and rapid onset argue against ALS and toward something more inflammatory (of which myelitis is an example). There are certainly persistent forms of GB as well and I would ask about the possibility of an empiric treatment trial if the MRI [and I would think more blood work that will be done] supports it. Covid is known to provoke autoimmune disorders in some people.

 

[fred12378]

Hello Igelb, thank you very much for your answer, which should be reassuring.
I still have to wait for the MRI for 3 weeks.
My GP thinks I should make a brain MRI at the same time to check if there is something else going on, what do you think?

The thing is, I am really worried about my condition. Is it really that « rapid » as you say that my symptoms began 6 months ago and are slowly getting worse ? I can still walk and hold things, I am not in a wheelchair.

The thing is, I really have the perfect picture that ALS describes : weakness, then muscular atrophy on left arm and right leg, weight loss, muscle twitching that began in one place and now is in my biceps, shoulders, deltoids, abs, thighs, and shin as soon as I rest my muscles or sit down.
I can’t lift my arms really up for long. I can’t do sports.
I am breathing badly after a few steps. I am exhausted and have morning headaches.
I also noticed that my muscle between the thumb and index has melted especially in my left hand. Hands are getting a bit of a weird appearance.

I mean, does a clean EMG one and a half months ago, really rule out 100% ALS despite everything I am going through? Why do I read something else everywhere, and even my GP told me it’s really tricky to diagnose at the beginning and especially when you’re young ? Can the next EMG be positive ?

I am sorry but I don’t understand, I am desperate I might not be able to see my 3 and 6 years old daughters grow up and take care of them.

I hope you understand my situation. I know that a lot of you are going through a lot of pain and issues and I really respect and admire your courage.
Thank you

Fred

 

[lgelb]

I agree that a brain study could be helpful, yes, if your doctor is in accord.

I am not sure how you got the idea that your onset is the perfect picture for ALS. ALS typically begins stealthily on one side, in one region at first, spreading by region, not all over. It does not manifest in all the ways you describe at once.

So I am not just saying I don't think it's ALS because your EMG was clean. But ALS is also a diagnosis of exclusion, with many other conditions to rule out. That is the process you are going through.

Do not try to do more than you can do, physically. Whatever is wrong, do not let worry sap your energy. Stay off Google, where there is a lot of nonsense. Play with your kids.

 

[fred12378]

Thank you for your answer.
I try as much as I can to stay away from this but the weakness is just here. I have difficulties grabbing things especially with my left hand as this hand has much less muscle than the right one, I can clearly see atrophy, as you can see comparing left and right hand in the pictures.
I know that split hand is a sign that comes in very early in the disease …
All the fasciculations are still here.
Except in the tongue.
I am really worried this is just the beginning.

 

[Nikki J]

Pictures are not allowed. Atrophy needs to be determined by your doctor in person. Apparently she did see it if your exam was unremarkable. Even if you have it there are many causes. Your emg being normal makes ALS unlikely. Please continue to work with your doctor. Multiple bouts of covid and having had gbs have certainly placed a strain on your body

 

[fred12378]

Okay well I am very sorry to have bothered you with all this.
Knowing if people here had hand atrophy at early stages would have been a good indicator.
I will post here when I have news from my doctor then.
Take care.

 

[fred12378]

Hello everybody
I saw my neuro today so I wanted to add some info for people having the same kind of symptoms as I do, and I know there are many.

My PCP wanted me to see my neuro again after seeing a lot of muscle twitching during an exam and a thinner thigh on the right. She also made me do cervical and spine MRI, and cerebral MRI, and some blood tests to eliminate everything else.
Everything was clear.

Today, my neuro did a few muscles on EMG again, because she wanted to be sure that there is no change since last time. Everything is fine.
She told me my fasciculations are actually myokimia, because it’s very rythmic and not continuous, like a bag of worms moving.
She also had a clinical exam which was fine.
She told me I do not have ALS or any kind of neuropathy.

So. Something is going on.
I have EDS, and all that twitching, fatigue, post exertional malaise, cramps, insomnia, vascular disorders and other kind of things, that began after Covid.
But it’s not ALS. So I feel very lucky.


Thank you all for your responses here, and for my own mental health, I will not visit this forum anymore, but I will give some money to ALS research this evening online. That’s the least I can do.

May you have courage, all of you being affected by that horrible disease.

 

[Nikki J]

Thank you for sharing. It is very helpful to those who follow to read outcomes like yours. Best of luck