ALS or neuromuscular disease?

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Delacroix11

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Good morning all,

Note that I have read the thread pinned on this part of the forum.

I am a young man of 26, in good health so far.
But now for more than eight months everything has deteriorated.

I have multiplied the examinations, whether they are radiological or otherwise, and I am not getting any response to my symptoms.

That I have :

- Pain in the buttocks alternating right and left, feeling that my legs are made of wood, feeling of having the right leg shorter than the left (which is not the case, demonstrated by EOS radiographic examination).

- Random muscle twitch, all over the body, especially in the lower limbs. They are sometimes so brutal that I jump.

- Sensation of tingling, running, tingling on both feet and down the legs and thighs.

What I did:

- MRI of the entire spine: Nothing.

- MRI of the pelvis and hips: Nothing, nothing in favor of a myopathy.

- Blood tests including lupus, systemic disease: Nothing except an increase in my CK (250) which worries me a lot (I read that it was a sign of muscle pain).

- X-ray: Nothing, no herniated discs or others, no disorders of the skeleton.

And finally a single electromyogram which turned out to be unremarkable but which I particularly doubt today. OK, the physical examination, if I had a disease like ALS, should be of concern. He is not. But can we 100% conclude that a normal EMG indicates the absence of a disease of the motor neurons? I have read edifying testimonials on this subject, with in particular the sometimes presence of sensitive signs ... What I know is that my legs no longer have the same endurance as before, walking becomes difficult and I have wrong. The fasciculations are also multiplying more and more.
J'ai des réflexes vifs (deux jambes) ; pas de signe de Hoffman, pas de signe de Babinski

What do you think ? The increase in CK, intolerance to exercise, ect should they not lead me to investigate further?

Take care and thank you for any answers you may have.

Greg

I have sharp reflexes (two legs); no sign of Hoffman, no sign of Babinski
sorry I marked this sentence in French in my first post (I come from Quebec) and I got confused ...
 
Normal emg and normal exam= not ALS. Added to that your report of pain,tingling and ” feeling” something in your legs. Sensory symptoms like this are not ALS symptoms. Twitching is completely meaningless as it is incredibly common. CPK is utterly nonspecific. Exercise intolerance is as well
 
Unfortunately I am back.
I did not have time to thank you for your answer so I will do so now.
My legs are making me suffer a lot. The right leg seems more contracted than the left. My thighs, knees and ankles are in terrible pain and I feel like my right leg is getting weaker and weaker. I still have sensory symptoms like tingling, etc, etc.
You say the pain and sensory symptoms point out to ALS.
I was able to read, here and there, testimonies that say the opposite. It seems to me more and more difficult to believe in another disease: I have almost covered the matter with my medical team. I have this feeling that my legs no longer support my body weight at all. I'm thinking of making a new EMG, what do you think?
 
Have you tried physiotherapy? Another EMG is not going to change the story. And the anecdotal evidence you've read to the contrary, you don't describe ALS. No one's asking you to believe in another diagnosis, only not to chase this one and risk missing something treatable. What does your team think is the next step to alleviating your pain? That's the real question.
 
Hi Igelb,
I am followed by a physiotherapist but I do not have the impression of evolving favorably, despite three sessions per week ...
I went to see an orthopedist who told me that I have bilateral patellofemoral syndrome. But considering my medical history, seeing everything I was told that was not true, I highly doubt it.
You are right on one point (you point it out, and rightly so): I am obsessed with ALS. I try to get out of it, to think of something else, to see things in a positive light. Sometimes I get there, sometimes not and I'm ashamed to post here, on this forum, where people really sicker than me are registered ...
I do not know the next step for me. I have been experiencing unexplained symptoms for a year now and fear is taking over. I have an appointment with an internist in a few days and I dare to hope that she will bring me answers.
 
Have you seen a rheumatologist and been checked out for fibromyalgia? Also, a rheumy can test for a lot of other possible conditions in the area of autoimmune.

If I were you I'd give that a shot.

Meanwhile, if you are overweight, consume caffeine, or don't eat lots of fruit and vegetables and drink water, that would be a good place to start while your figuring out what is wrong.
 
Hello Kim,

I have consulted several rheumatologists. We looked for polyarthritis, spondylitis, autoimmune diseases, etc, etc. Everything invariably comes back negative.
I gained quite a bit of weight (15 lbs) in a few months, I am trying to lose it now to see if I have any improvement.

My gait seems weird like "robotic" with the back of the right quadriceps, the sural triceps, which is contracted every day.

From what I understood from your answers, then you are not worried about an MND?
 
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