Spinal cord inflammation or MND?

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SteveCs

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Dear lovely people
I have quite a long diagnostic story which I will try to cut short.
You with your experiences might be able to help me get some things straight.
I'm 26 so I know odds are in my favour but I have quite an unusual story.

2020.12.29. When looking down while running, my two thighs felt electric shock feeling.
Lhermitte sign - fear of MS.
2021.04. In an MRI a 4x4x8 mm lesion was found at the height of my neck, positioned toward the left, where my symptoms were stronger
deemed as cervical myelitis, i.e. a spinal cord inflammation.
During this 4 months pins and needles, tingling extended to my all four limbs. No weakness, no other symptom.
Lumbar puncture showed normal values except an elevated IGg index, that is there was autoimmune activity (although they said, it's also present in MNDs, so it doesn't exclude MND.

I know these all point away from MND. But now comes the twist.

2021.08 twitching started in my both calves, which has been constant for 3 months.
occasional twitching appears all over my body
tingling, pins and needles have disappear except from my left hand.

2021.09-10-11
Percieved weakness and stiffness appeared in my left hand and arm and legs, they are heavier, harder to lift.
When training my left hand and leg is getting tired really easily then stay heavy for days.
Left thumb is getting stiffer, cant play video games as used to because my muscle gets cramped easily.

So here I stand, terrified of limb weakness slowly getting worse, it doesn't limit me as of now, but if it continues like this, it definitely will in a few months.
Of course I fear of the worst: ALS.

Do you have any tips what this could be? My neurologist is specialised in Neuromuscular diseases is quite relaxed that there is no big problem, but I'm not convinced.
I feel like they labelled me with something mild, and doesn't really think of serious stuff, because of my age.
I'm thinking of getting an EMG, but I'm not sure it will give me results that I'm looking for.
Is it capable of differentiating motor neuron damage from inflammation or MND?
Because I'm scared that they would find motor neuron damage and I would be horrified while it could be from something other than MND.
Could a MND start with tingling and transform into limb weakness?
 

Bestfriends14

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No, MND does not start as tingling and turn into MND. In fact, tingling points away from MND. Your neurologist is relaxed about your symptoms because they are not a bit like ALS symptoms. You said you are thinking of getting an EMG but worried it will not give you the results you are looking for. I'm not sure I understand what you mean. Are you looking for an MND diagnosis? Because an EMG will not give you that because you have no ALS symptoms. Lastly, yes, an EMG can differentiate between inflammation and MND.

If you have not done so, I strongly suggest that you read the sticky at the top of the subforum entitled "IMPORTANT: READ BEFORE POSTING!"

This should answer your questions as to why your symptoms are not ALS onset symptoms. Keep working with your docs because ALS is not what you have going on.

Good luck to you and please take care.
 

SteveCs

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I have seen several of your replies and really appreciate you taking the time not only to answer me, but also for others.
Stay strong, thank you very much! : )

Worst is that I'm aware that MNDs don't start with tingling, but this progressing weakness and stiffness in my limbs have left me clueless while my neuros just keep saying that I shouldn't worry it could just by that inflammation.
 

Bestfriends14

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Stiffness is not ALS. What is it that you cannot do? Is this "weakness" confirmed by a doctor i.e. clinical weakness? The hallmark of ALS is loss of function, not tingling, not stiffness, not feeling tired after doing something. It is a complete inability to do what you once could. For example, one is no longer able to stand on one's toes or go back on their heels, no longer able to button their shirt or zip up zippers. That is what weakness is and I'm pretty confident you don't have that.
 

affected

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not the least sign of ALS in your long story - and you can take comfort that if you think, well yes lots of the things happening are not what we show as the important things in this critical post, it means you really don't display symptoms of ALS.
Please work with your doctors and believe them telling you that it isn't. You don't have the medical knowledge needed to work this out, especially by trawling Dr google.

Read this carefully, it is our offical position and worth reading twice. I wish you all the best.
 

SteveCs

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And you're most certainly right, I don't have complete inability to complete any of the tasks I was able to before. But there are things that are more difficult such as standing on my toes on my left leg or holding out my left arm with my fingers stretched. What I'm afraid of is that I've read here it's a slow progressing disease which my be even slower in younger individuals, so I rather fear that these difficulties will culminate into complete inability and that it's only the beginning.
 

Bestfriends14

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That's not how ALS works, as we mentioned in our replies. Young or old, when a loss is a loss, that's what it is. There is so "feeling difficult " because that group of muscles no longer work. Since your questions have been asked and answered, you no longer need to hang around a site for the terminally ill.

Good luck to you and please take care
 
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affected

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The problem with reading this section when you fear ALS is that you believe that all these people have ALS because they keep saying they fear they do.
As said, even slow progressing ALS simply doesn't work the way you are describing your symptoms and you have had neurologists attempt to tell you this.
We can't do anything more as we are not doctors and can't examine you.
You need to return to your PCP and voice all these concerns to them and get a plan of action in place. Voicing to us is not the least productive now that we have answered you.

Truly I wish you the best, we wouldn't wish this on anyone.
 

Clearwater AL

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Get Real
Being 26 years old also brings in the odds.... as you yourself wrote.

We see (read) so many in their 20s nearly crippling themselves with
severe Health Anxiety. You've been searching the Forum, Dr. Googling
about ALS. Spend time researching Health Anxiety. Yes, you have
other health issues... treatable hopefully curable. Not ALS.

As replied above.... there really isn't anymore we can help you with.

You're in the best years of your life (20s) right now not to be burdened
worrying about having ALS. I remember my 20s well... no regrets.

Work with your PCP and get this behind you so you can do your 20s
with memories you'll cherish years later.
 
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SteveCs

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I really, really appreciate your answers, and you know what?
I believe you, believe my doctor and will try my best to forget about this.

Thank you very much for taking the time and help me with your answers,
I wish the general community of people would be as helpful as you are.

Stay strong and spread the love you beautiful people!
 
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