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loveisfreedom

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Hello,

My boyfriend is currently going through tests and the doctor has begun to lean towards a diagnosis of ALS and I wanted to post on this forum if his story sounds familiar to anyone.

He is 32 and over the last 6 months has noticed that he cannot raise his toes in his right foot. He can push his toes down just not up. He has gone for numerous test including a muscle biopsy and EMG where they didn't find anything. He also has muscle twitching in his thighs. He currently does not have any problems in his upper body, his upper body is quite strong. Although he did have severe back problems about 4 months ago.

He is going for an MRI at the end of this month. The doctor said that if the MRI shows nothing then she will diagnose him with ALS.

Does this all sound ok? Could it be something else?

Over the last 2 weeks he has started to be able to move his toes up which is something he could not do for months.

Any advice anyone could give would be great appreciated.

Thank you.
 

BethU

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Hi, loveisfreedom ... I don't understand how your boyfriend's doctor could diagnose him with ALS if his EMG was clean. There have to be certain criteria met for a diagnosis of ALS, and if none of his tests show evidence of ALS ... what is she basing it on?

I would certainly stay hopeful ... and get a second opinion.

Good luck. And welcome to the forum.
 

loveisfreedom

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sorry his EMG wasn't clean. i got my information mixed up, its been a long couple month.

EMG results

left leg was 5 (normal)
Right leg was average of 3
Toe was 0

Since then he has now been able to move his toe alittle.
 

wright

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The values you have stated for his "EMG" are not EMG values. Those are values for muscle strength in his limbs. The scale is from 0 to 5, 0 being no strength and 5 being normal strength

Do you have the actual EMG report? If so, transpose it on here so we can see it. It will have columns listed with things like positive sharp waves, fibrillations, fasciculations, motor unit potentials, recruitment, etc. There should also be a nerve conduction study.

What were the results of his muscle biopsy?

What are his reflexes?

Furthermore, if he is now able to move his toes and could not prior to this, then that is not at all how ALS works. Once the damage is done, the damage is done.

Beth is right: Go to a specialilst and get another opinion. That neuro you are seeing was irresponsible for saying such a thing.
 

KANSASTOM

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What are those values? Are they reflexes, conduction velocities, Positive sharp waves or fibrillations potentials, need more detail. Alot of things can cause the toe problem.
 

loveisfreedom

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ok i am going to ask my boyfriend for this results.

yeah we are getting alittle suspicious of the doctor. she setup an appointment for after the mri and she made it at the als clinic not her office like she usually does.
 

planningguy

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Hello Loveisfreedom,

When you say she scheduled him at the ALS clinic, did you mean with another Dr. or is his present Dr. affiliated with a clinic?

Going to a certified ALS clinic would actually probably be a plus as the specialists are more accustomed to seeing ALS and illnesses that have similiar symptoms. The testing he would recieve would help home in on possibilities and alternative diagnoses.

Best of luck in getting to the bottom of whatever is going on.

Robert
 

loveisfreedom

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His current doctor is a neurologist and her office is not usually in the ALS building.

Turns out they never gave my boyfriend a print out of the EMG results, I suggested maybe they should do another one. Especially since we have seen improvement in his foot/toe.

Thanks Robert. I will tell my boyfriend about the ALS clinic being a good place to be.

Thanks for your help.

Patty
 
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