Our 28 year old daughter...

Status
Not open for further replies.

LorriC

New member
Joined
Jan 25, 2020
Messages
1
Reason
Loved one DX
Diagnosis
01/2020
Country
US
State
CT
City
Bethany
Hello all,
As if the state of the world isn’t enough with the Coronavirus, our 28 year old daughter was recently diagnosed with MND. They are leaning towards PLS but won’t be able to give a more definitive diagnosis for about another year as they monitor her symptoms. She started with a slur in her voice, a little clumsiness, early morning grip loss in her hands and some pain/stiffening in her leg. Is there a place I can find the incidence of PLS and/or ALS in people of her age? We are very distraught and looking for direction with how to help her/us navigate through this insidious disease. We are in the U.S.
Thank you so much for being here,
Lorri
 
hi lorri
my symptoms started when I was 30 and it took 4 years to get my diagnosis. I am now almost 40.
there is a website, young faces of als. There are stories, fundraising and research of people diagnosed before turning 35. Pete Frates, who started the ice bucket challenge was also in his 20s when diagnosed. There are a few others who have done some amazing things. When your daughter is ready tell her this forum is very supportive and is a great source for info. talk to your local als association about equipment that will make things easier. Or ask here, there are many different tips and tricks that people have used.
 
Here's an article that talks about age of onset of 50 PLS patients:

My symptoms started at age 47. That seems about middle of the road for PLS. 28 is very young, but not impossible. Although, I would definitely get a second opinion. My symptoms seemed to plateau after about 7 years. I am at 9 years now. It affects my entire body but I haven't lost total function of anything. I can speak, albeit slowly and slurred. I can walk, albeit with a walker, etc.

I suggest joining the Facebook group "Primary Lateral Sclerosis (MND)". For research news there is the Facebook group: "Research on Motor Neuron Disorders: PLS, HSP/SP, and ALS".
 
I would also want a second opinion from an neuromuscular specialist.

Gorby offers some good advice.
 
Hello, I was diagnosed with ALS at age 31, symptoms started very gradually about 15 months earlier. I am in a FB group "ALS age under 50" that has PLSers too. There seems to be a correlation of slower progression and early onset, which is positive.
 
Did they check for Hereditary Spastic Paraplegia?
I think it is more likely at that age.
I am not a medical professional, just my thoughts.
 
I don't know that there ARE current articles to point to the frequency of PLSers in their upper 20s. I know it happens but it is less common than in older adults (it's all about the statistical bell curve). If you are still seeking information, I too would recommend the Research Group on Motor Neuron Disorders. There, you will find the most recent published work on PLS and over 100 posts on PLS specifically (the group also covers ALS and HSP. Search for "Research on Motor Neuron Disorders: PLS, HSP/SP, and ALS")
 
Status
Not open for further replies.
Back
Top