Diagnosed almost 4 years ago, and have questions (first time poster) :-)

[lgelb]

Christine,

It's certainly an abnormal study, and I gather the possibility of a demyelinating neuropathy was never explored further, but what really stands out is (1) you were not diagnosed by a referral center specialist and (2) your atypical and slow progression 4y later, with features such as seizures and severe urinary retention.

Again, along with everyone else, I encourage you to see a neuromuscular specialist, to review your diagnosis and recommend any further testing indicated at this time, including possibly a new EMG.

 

[ChristineRK]

Thanks, Laurie,
I've made a few appointments and am on my way to getting there.

Thank you for reviewing my results!

Enjoy the rest of your weekend!

~Christine

 

[ChristineRK]

Who is following you now for all this? Did you ever see a neuromuscular specialist/ go to an ALS clinic?

A fair number of us question our diagnosis at some point. This is particularly common if you progress slowly.

Some of the things you have described don’t sound typical of ALS so a second neuromuscular opinion as Laurie suggested seems like something that is worth getting if you haven’t had one.

And yes breathing needs to be checked

Hi Nikki,
I see you were diagnosed in '14. Are you having a slow progression as well? May I ask where you are in your abilities to do things?

Thank you,
~Christine

 

[Nikki J]

Extremely slow progressing very lucky. Though most of my family except my poor sister have been slow. I still live independently though have had to modify things

 

[ChristineRK]

Extremely slow progressing very lucky. Though most of my family except my poor sister have been slow. I still live independently though have had to modify things

That's excellent, Nikki! Thank you for sharing your information with me. .....I'm sorry to hear it runs in your family.......

~Christine