going through diagnosis, struggling to stay hopeful

[Nikki J]

That is certainly a concerning summary. They did say the February lower limb emg was normal. It is hard to believe they lied on the report. As you say the thoracic ( paraspinals?) was not obtained last time.

Have you asked for riluzole? Did you have the genetic testing? I would push for both. The chance of so called sporadic sod1 is about 1% but the payoff in getting access to qalsody would be huge

I am sorry it turned out this way however expected

 

[Kelbi]

The "normal" lower limb was in March. The February one was at a different hospital and I don't have the notes for it. I might be misremembering though.

The genetic testing is being done, but I won't know the results until probably August. I'll definitely discuss riluzole at the second opinion.

 

[Nikki J]

Glad the genetic testing is happening. If the diagnosis is confirmed ask about all the approved drugs. Good luck