Possible ALS?

[wchagas]

Hi! My name is Wallace, i'm from Brazil - RJ and I am 25 years old.

I've been around since my last visit in my neuro's clinic. He directed me to go to an institute to see a specialist MND. When I saw that this institute was to diseases like ALS I was panicking and read everything about the disease and even made some contacts with members of the group.

My symptoms are:

Atrophy in both hands
Soles of the feet as well as some parts seem to be stunted
Fasciculations throughout body
I'm afraid to be having fasciculations in the tongue, but not sure
Weakness in both arms
I feel pain in the knees, sometimes on hands
In fact, several parts of my body look like they are stunted
Much phlegm in throat
I burped enough but it's not like I had gas but it seems something related to throat (can not explain)
I have reflux (not congenital)

I can walk, talk, swallow, take things but I think I'm more fatigue today.

I made several laboratory tests such as blood tests, MRI of the brain [that showed focal lesion with high signal on T2 and FLAIR located in the white matter close to the body of the right lateral ventricle] but my neuro said that would not explain the symptoms; took to autoimmune diseases, cancer markers and everything went clean, only vitamin C that has very very low.

My EMG of lower limbs showed at the end of the paper: Compatible with sensory axonal neuropathy. When my neuro looked at it he said he could still be ALS but in its early stages.

I'm already with the idea that I have ALS unfortunately. I still hope it is not. I'm in an expert on 16/09 to score some tests and see what is happening. My biggest fear at the moment are the bulbar symptoms.

I know that the time of all PALS is very valuable and as I have read all the topics of this session, I know how stressful dealing with the anxiety of many - especially after the challenge of the ice bucket. But I would like some opinion about my situation.

Thanks!

 

[wchagas]

Sorry for the english, by the way.

 

[Atsugi]

Atrophy in both hands >>> This is a problem, but rarely ALS.
Soles of the feet as well as some parts seem to be stunted >>>> I don't understand
Fasciculations throughout body >>> Could be anything, or nothing at all
I'm afraid to be having fasciculations in the tongue, but not sure >>> Doctor didn't see them.
Weakness in both arms >>> Doesn't sound like ALS.
I feel pain in the knees, sometimes on hands >>> Definitely not ALS.
In fact, several parts of my body look like they are stunted >>> I don't understand.
Much phlegm in throat >>> Not ALS.
I burped enough >>> Poor manners, but not ALS.
I have reflux (not congenital) >>> Not ALS.
I think I'm more fatigue today. >>> Not ALS.
Compatible with sensory axonal neuropathy. >>> Not ALS.

I don't see ALS in you, Wallace.

 

[wchagas]

Thank you for your time, Atsugi. Change the word "stunted" for "atrophy". Sorry for the english I was using google translator

 

[Kosmoskatten]

Do you have atrophy diagnosed by a neurologist?

 

[wchagas]

You can see "holes" in my body as if there were atrophied muscles. In parts like hands, soles of the feet (both), knees and other parts. I'm really scared. One question: Can the ALS attack various parts of the body at the same time?

 

[wchagas]

"Do you have atrophy diagnosed by a neurologist?"
No. He actually did not consult me right. After he heard the symptoms and saw the result of ENMG he pointed me to go pro institute.

 

[Kosmoskatten]

My apologies, I actually missed where you said how your EMG findings were interpreted.

I do not fully understand what you mean with "pro institute". But what I have learned is that findings that point toward axonal neuropathies could also be indicative of certain more uncommon form of Guillain-Barré syndrome.

If you feel your neurologist did not treat you right, or did not have the knowledge needed, I would strongly advice you to seek second opinion. I do not feel comfortable with neurologists that bring up the ALS-card before everything else is ruled out. Secondly, bringing up the ALS-card without acute and chronic widespread denervation is odd. Then again, I am no doctor nor have I seen your EMG.

ALS usually starts localized, i.e not all over the body.

My advice is to seek second opinion. This however, does not sound like ALS.

 

[wchagas]

Thanks for your reply!

Im going to an ALS Clinic the next week and there I Hope i'll get a second opinion. Would the "sensitivy axonal neuropathy" be an ALS signal? Or its points to another cause? Thanks again for your reply and patient!

"pro institute" I meant "ALS clinic". My english is very bad

 

[Atsugi]

"Compatible with sensory axonal neuropathy." points AWAY from ALS.
ALS affects the motor nerves, not the sensory nerves.

 

[Dusty7]

Sensory axonal neuropathy would indicate the problem is not ALS because it is in the "sensory" nerves, not the "motor" nerves and if it is axonal, the problem is in the axons that extend from the lower motor neurons to the muscles, not the motor neurons themselves.

 

[wchagas]

Thanks for all responses. Next week I'll update the thread with the ALS' specialist opinion. Thanks!

 

[wchagas]

Hi. I went in specialized ALS clinic and saw the neuro. I have atrophy in both hands, knees, and in some parts. He noted fasciculations and atrophy but not hyperreflexia and weakness. He ordered some tests and nerve conduction studies. I do not know what to think ... and my biggest fear is worse in the meantime. The next appointment will be on 16/12 ...

Best wishes,

W.

Translated by Google Translate

 

[wchagas]

Sorry for posting twice: is there possible ALS starting with bilateral atrophy with no weakenss? Atrophy in ALS comes in which order? Thanks!

 

[Nikki J]

That would be very unusual. The atrophy in ALS comes from lack of use due to loss of function and weakness. What did your neuro say?