I'm scared

[Frogeyland]

Hi everyone my name is Sara. In September 2015 I was tentatively diagnosed with upper motor neuron disease by the ALS specialists at Northwestern University in Chicago. I've had 2 EMG's that show chronic denervation in a couple of muscles in my lower legs and a muscle biopsy analyzed at Mayo that confirms the denervation/reinnervation and fiber type grouping. My neuro is currently reviewing the muscle biopsy slides from Mayo. The muscles in my right hand are starting to atrophy and I've got that claw hand thing also (I'm right handed, my symptoms are worse on my right side). I continue to get gradually weaker (slowly), and stairs are the worst. I'm scared. I'm 38 years old and single.

Question for you guys: At what point do you (or can you) draw the line between primary lateral sclerosis and upper motor neuron dominant ALS? My neuro said I don't have "classic ALS" which is good and that my progression is slow (also good).

Thanks everyone this is all new to me.

Sara

 

[texastc]

Hi Sara. Im sorry to meet you under these conditions. I can't help you with your questions, but there will be others who will chime in momentarily I feel certain. You will find a bunch of support here, in more ways than you can imagine today.
tc

 

[lgelb]

Hi, Sara. Welcome and try not to be scared (easier said, I know).

If you check out recent threads on the PLS forum here (it's "PLS Support Group" on the top menu), you'll see some answers to the question you asked. In brief, PLS is re-diagnosed as ALS, if it's going to be, about 4 years in on average, but has been as long as ten in. So the longer without lower neuron signs, the more likely it remains so, obviously. PLS is much more rare than ALS so the odds are that you will ultimately be diagnosed with ALS. However, as you noted, some PALS progress faster than others.

That's a lot of years, so my suggestion is to hope for the best (PLS) while preparing for the worst ("converting" to ALS and perhaps more rapid progression at some point). If you make those plans early, you're in a position to live your life adapting as things come, rather than eying the sword of Damocles in place of that life. We'll support you as best we can, along the way.

Best,
Laurie

 

[Frogeyland]

Thank you! I should've mentioned that my symptoms are predominantly spasicity, hyper reflexes, clonus, weakness, muscle hypertonia, abnormal gait.

 

[Frogeyland]

You guys are wonderful I wish I would've joined sooner.

 

[scaredwifetx]

I am so sorry to welcome you here. Just know that everyone here is so generous, kind and there is no question that will go unanswered. When you are scared and feeling alone just sign on here. Hugs!

 

[gooseberry]

This group of people have your back. They understand this disease and can offer many suggestions. I have gotten immense support from our group, you will too.

When Steve was first diagnosed, we all went thru a dark period. It took awhile to adjust to our new normal. Do all the things you love, and if you need help figuring out how to do it, we will be there for you. Welcome....

 

[Ells]

Hi Sara,

I was also 38 when I was diagnosed w/ ALS. It's tough to get your head around such a diagnosis; you'll go thru lots of emotions - fear, guilt, anger, sadness - trying to make sense of your life. But, there IS life with ALS, different for sure, make it count.

Hope you stay at UMN ALS diagnosis for a few years.

Ells.

 

[fionae]

Dear Sara,

Along with everyone else, though I'm so sorry for
the reason you are here, I want to say welcome.
You are in a good place, being here.
In my opinion, it is by far the best place you can
be when you have received this frightening news.
You are not alone.
We are here.
I would like to echo ScaredWife's words...when you are scared
and feeling alone just sign on here...

Sincerely,
Laura.