This is not ALS

[FrenchFries]

That's maybe what some of you are going to say! I already read all the caned responses some of you have posted.... Maybe it's what I need to read now... (I’m French so please do not pay attention to my grammar and narcissim.)

It's been a while ( 6 month I would tell) that I am coming along this forum weekly to read the stickies again and again... trying to do understand my condition.

I can’t help myself from thinking that ALS is to me, rationally, the most probable diagnosis. I have checked every possible differential diagnosis but no one fits.

Here’s my condition summary (progressive spreading, no good day)

Novembre 2012 : foggy legs, tingling, pain, burning, fatigability
June 2013: hands now affected + facics from time to time + fatigability getting worse
January 2014: all the body is affected (facics+fatigability) + face tingling and pain. Muscles are shaking for a minimal effort when I contract them.
July : all my head and face muscles are getting stiff, all my body is getting weaker,fatigability worse.

Now : I have facics in my face and in all my body episodically, neck head and face very stiff as if my face and throat has been covered with a glue layer: muscle resistance to contraction is increased. I still can hide it but I guess within 2 months, I may not speak intelligibly.

full blood tests, brain and medular MRI, 2 EMG (january and july 2014): all clean.

I know what you’re going to tell me : Pain, tinglings, clean emg rule out ALS.
But the fact is : I do not manage to rationally think this way. Something is not clear to me. I think for example that emg cannot detect early disorder linked to als, I think Pain and tinglings do not rule out ALS and I think fatigability may lead to weakness.

So As I am sure something very very wrong is happening to me, with bulbar region involvement, with fascics and fatigability, something progressive over years...; I can't help it...

David

 

[affected]

No problem David. My husband died of bulbar onset ALS, but what would I know. You have it all worked out.

I suggest you leave this forum immediately and go have ALS somewhere else.

 

[MaxEidswick]

Go to a proper ALS MND clinic, doe the 3 day exam, and assure yourself. It is worth whatever it costs.

 

[Atsugi]

David, personally I think you have an allergy to a pill. But I'm not a doctor.

You're right that your don't have ALS.

You seemed to question the EMG, so I'll tell you what I know. The EMG will show nerve damage BEFORE the muscles became weak.

 

[FrenchFries]

Max> I do not know something like this exist. thnak you max but there is no such trial in france as far as I know. do you know if there is a know "test procedure" or a "protocol" that I can ask for or "import" in france?

Tillie> well, I hope you are right.I am sorry, I just don't know what happens to me. I am kind of lost and a little lonely with that. The fun thing is that I waited so long to post this message. I am feeling bad lately, so I gave it a shot... maybe I shouldn't have.
Thank you for your response anyway.

 

[FrenchFries]

Atsugi> I don't take any pill but Thank you atsugi for your answer!
About the emg, you said nerve damage will show up.
I have one question about that: I pass 2 kind of tests when I did the EMG.
1. nerve conduction (when the neuro puts electrode along the limbs and face and sends litle electric shocks) I think this measure the speed and the quality of nerve conduction > it's the nerve integrity.
2. muscles test (a needle is sticked in one arm or leg, then the patient have to contract it). the eletric activity is recorded.
my understanding is that ALS do not altere the peripheric nerves, so only the second test is relevant. But if it is, I am finding it very very hazardous...
Am I wrong?

 

[AfraidButNotAlone]

May God bless you and keep you close to His heart.

 

[Atsugi]

2. muscles test (a needle is sticked in one arm or leg, then the patient have to contract it). the eletric activity is recorded. my understanding is that ALS do not altere the peripheric nerves, so only the second test is relevant. But if it is, I am finding it very very hazardous... Am I wrong?

The EMG can detect nerve damage very, very early. If you have any symptoms, it is already on the EMG.

The doctor may do the NCV and EMG as two of the tools to see the overall picture. He will rule out many, many other diseases and settle on a diagnosis of ALS only if the disease is nothing else. Your problem could be many things.

ALS only kills the motor nerves. It does not affect the sensory nerves. It does not affect the autonomous (automatic) nervous system, like regular breathing, sweating and heartbeats.


I don't know what you mean by hazardous.