Could this be ALS ? From France

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Tazor

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Hello to all of you.
First of all, huge respect to all the pALS and cALS over here. Having learned so much about this disease in the past few weeks, I can only imagine the pain that this diagnosis brings.

Here's my story :
Mid February 2022, I noticed that my right foot was very slightly dropping. Having already suffered from a pinched nerve back in 2018, precisely in the left kneecap, making my foot drop and loss of sensitivity. I thought "oh no, not again."
But the sensitivity loss never came. Actually I stopped thinking about that until recently, beginning of this April.

10/11th of April, I noticed my right leg felt suddenly weak, it was shaking when I was pressing the gas pedal.
Then all sped up. I noticed that I lost about 6/8kgs of usual weight (that's about 13-15 pounds following your metrics.)
I noticed that I had muscle loss in my right leg. This brought me to my family doctor. At that time I knew nothing about ALS.
My doctor had a very good reaction (looking back at it, having learned about ALS.) and prescribed me an EMG of my lower limbs + a cerebral MRI.

Then more symptoms appeared. Fasciculations started, hyperacusis (right ear) and some black dots impairing my vision from time to time.
A huge red flag for me was that I felt super weak after my usual weed joint. (I have been smoking for +7 years, and you could say I have been a weed addict for 4 years now.) The weakness was accompanied by a burning sensation in literally all my right side. From the top of my head to my feet.
From this point I completely quitted weed. But the weakness was always here.
A constipation also arrived. It never left since then.
This brought me to the emergency services in a French hospital.
Told them the story, and they noticed a slight right leg atrophy. But at that time, the muscle weakness went up my right arm.

The emergency neurologist reassured me, told me I might have a pinched nerve in my leg, and since I told him I had a an appointment for a lower limbs EMG in a few days, they just sent me back home.
I'm not a doctor, but I knew this wasn't a pinched nerve. Since I previously experienced that. So I started the googling.
First things that comes up when you type "muscle weakness" and "fasciculations" is ALS. Having done a lot more research since then, I know there's a lot of MND and in the early stages you shouldn't "aim" for the worst.
I also got a few blood test before the neurologist appointment. Which showed a big deficiency in B12 vitamin and D vitamin. HIV and lyme disease have been ruled out.

23th of April, the neurologist made the EMG/NCS of my lower limbs. Conclusion was like : "At this day, it's reassuring." But hearing all my symptoms, they also prescribed me an MRI of my spine. That only made me more anxious since I had done my googling at that time, and I knew Brain and spine MRI are to rule out other disease or problems and then point towards ALS.
This appointment was really frustrating for me. She wrote that I had no fasciculations. But she only placed the needle in my quadriceps for 10 seconds on each side.
The NCS showed a velocity loss on the right side compared to the left. And then on the MRI prescription she wrote "Symptoms of insidious evolution."
How's that supposed to be "reassuring"? As if I wasn't gonna read the MRI prescription...

2 weeks after, I got the brain MRI, which showed FLAIR hypersignal in my left brain side. Spine MRI came clean.
Immediately after having both results, I went back to my family doctor (GP). Which said it was urgent to book my neurologist again. My neurologist was booked until October but she freed up a spot for me tomorrow morning at 7AM. Again, not really reassuring.
Basically my GP told me, it's either an inflammatory disease or a neuropathy.
Today both my arms feel a bit weak, but the right side of my body is still more impacted. I still have that foot drop sensation in my right foot. No motor loss as of today.

I suspect that tomorrow my neurologist will just send me to the hospital to get a spinal tap and a full body EMG.

There's a history of a neuropathy in my family, but it's not ALS. My grandfather gradually lost the ability to move his legs.
I'm terrified, since a few weeks, I'm almost crying everyday. I have the impression that I tick so many boxes for an MND. Just hoping this is not ALS. I can only imagine, as a lot of you guys hoped for yourselves or your relatives.
I'll keep you guys posted, hopefully with good news.

PS : Hope that wasn't too weird to read since I'm not a native speaker haha.
Sending my love and support to all pALS and cALS around here.

Paul

TL;DR : Gradual muscle weakness, fasciculations since more than a month. Constipation and basically a lot of exams that leads me more and more to believe that this might be ALS, or at least, a MND.
 

affected

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Hi Paul

I'm sorry you are going through this.

I would like to reassure you, if possible, that they are not looking for ALS at all in all your exams and tests, but are looking for an inflammatory disease process or a neuropathy. These are not ALS, and your symptoms really don't point towards ALS at all.

I know you 'feel progressively weaker' but PALS don't experience that. Constipation is definitely not an ALS indicator, and twitching means nothing. The EMG is a tool that is used to diagnose literally hundreds and hundreds of diseases. When they do one quite quickly, it is a great sign that there is nothing alarming going on.

Have a good read here to help understand more.
 

KimT

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Hi Paul,

I'm sure your doctors will get to the bottom of your symptoms. I know it's impossible not to worry when your body is acting funny but, I think, they are looking for some other things, of which there are many.

If they don't come up with something and you continue to progress, maybe some genetic testing is in order.

Best wishes.
 

Tazor

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Hi,
Thank you to both of you for taking the time to answer.
I must admit that I have read the "READ BEFORE POSTING" 5 mins after making my initial post.

My brain MRI showed a single (left-sided) lesion, and my neurologist said it could explain my right-side weakness. my GP mentioned that ALS could be a possibility. That's why I have been so terrified.
The vitamin deficiencies that I have will only worsen these feelings so I'll take those meds carefully as the doctor asked.

I'll do a second check-up with a different neurologist after this summer I think, just to clear everything out of my mind.
I just have been very concerned by the fact that all my right side has atrophied to some degree. I know humans aren't 100% symmetrical, but hey, my body wasn't like that before !

Nonetheless, I'll try to keep you guys posted after that second check-up, after the summer or maybe in the beginning of Autumn.

I am glad to be out of this medical loop for a bit of time, it will allow me to relax and think about something else.

Best wishes to all of you.
 
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