Finally have an answer

[andirai]

Hello all,

I received my second opinion at the Mayo Clinic this week and it is technically ALS. My neurologist was sure it was PLS due to the slow progress but my EMG showed a very small amount of lower motor damage. It is confusing but here is my diagnosis:

"Diagnosis: Given and that she has subtle lower motor neuron involvement she meets el Escorial criteria for clinically possible ALS, but her phenotype is more consistent with PLS. At this time I hope that her disease will continue to track in a PLS like fashion and that she will not developed more significant lower motor involvement which often happens."

My neuro said that it is very slow going and hopefully another EMG in 6 months will continue to show slow progression.

I know it sounds odd but I feel such a relief at finally having a diagnosis! It has been two years with no answers and now I have a starting point for the rest of my life. I am hoping for PLS but slow moving ALS sounds like a blessing right now.

 

[lgelb]

Sorry to hear the news, but as you say, slow progression is the best kind. Let us know how we can help.

Best,
Laurie

 

[Nikki J]

I am sorry but in a way that is a kind of good outcome. Meeting El Escorial criteria should give you expedited medicare/ssdi if you otherwise qualify and the possibility of clinical trial participation
Couple that with a hope of PLS like progression and if you must have MND it may be a small silver lining. Of course no MND would have been infinitely better

I understand you feeling some relief. True neurological limbo is not an easy place to be and 2 years is a long time.

Sorry to welcome you to the other side but you are among friends

 

[Bestfriends14]

I've been watching for your post for the last day or so, as I knew you had a neuro appointment this week. I'm sorry to hear the news, but I do understand the sense of relief you must feel. We waited nearly two years, as well. Not a fun place to be.

I have learned an incredible amount on this forum and the members have been very kind and supportive. I hope you find that as well.

Again, sorry about your dx., but I'm glad it's slow progressing.

 

[KimT]

Thoughts and prayers for continued slow progression.

 

[andirai]

It is so sweet that you remembered about my appointment this week. That is incredibly kind!

 

[andirai]

Sorry to hear the news, but as you say, slow progression is the best kind. Let us know how we can help.

Best,
Laurie

Thank you for all your previous input. I am doing so well that this must be the "denial" stage

 

[swalker]

I am very sorry to hear your news, but am also encouraged to hear that it is slow progression.

Steve