Confused and concerned

[Monika]

Hello everyone,
I will be 50 in a month, female, living in Australia. As most of the people in this section of the forum I have experienced some ALS symptoms and am concerned and worried.
I have noticed weakness of my legs for maybe few years. It has been slowly progressing until the point I cannot climb a higher step without helping myself using my hands. Haven't paid much attention before since I am overweight and have sedentary lifestyle and work in an office. Around 6 months ago I have noticed weakness in my lips; I cannot seal my lips tightly and cannot blow my cheeks as I used to. I have noticed it but thought it might have been remaining from my Bell's palsy that was 3 years ago. But Bells' palsy was on my right side where the lips weakness now is bilateral.
What prompt me to go for further tests was my visit to a physiotherapist who checked my reflexes and measured my strength of my extremities. The physiotherapist findings were weakness of various muscles at my left leg and left arm. Left side strength (leg and arm/hand) 4/5 where the right side is 5/5.
My visit at the physiotherapist and the lips weakness made me to go my GP searching for answers. GP recommended neurologist appointment and NCS/EMG. In the meantime he has ordered plenty of blood test for various conditions that mimic ALS.
I have done the NCS/EMG that is not clear.

The neurologist conclusion is as follows:

In my understanding ALS diagnosis through EMG shall consist of active and chronic damage of the nerves.

The facts that worry me are:
1. The MUAP findings of vast lateralis that defer to the other MUAP results.
2. The lips weakness that no doctor has confirmed could be a result of another condition.
3. If I eat ice-cream, my lips become much weaker and then they return to the previous state.
4. All other blood test for all possible conditions have been negative; the GPs are not sure what else to do with me.
5. My mother has a sousing who died from this disease.

Thank you for your time!

 

[Nikki J]

What did the neurologist say?
what relative of your mother had ALS? Did anyone else have it? Is your mother living? If not what happened to her?

 

[Monika]

Hi Nicki,
Thank you for your response!
The neurologist conclusion is in the post, here posting below again:

My mother's first cousin.
My mother is still alive, 72 years old, no related issues.

 

[Nikki J]

But did they not examine you and tell you what they thought was wrong? That is the report of the emg. A myopathy is not ALS or a precursor

one quite distant relative with ALS does not indicate an increased risk for you.

 

[Monika]

Yes the neurologist examined my strength and some reflexes. Looked at my lips and my tongue. Asked me to stretch my tongue and to move left and right.
All myopathies that the GPs thought about were tested and all negative :-(.
Just confused.