Our 28 year old daughter...

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
 

Trixie80

Distinguished member
Joined
Jun 21, 2014
Messages
103
Reason
PALS
Diagnosis
03/2014
Country
CA
State
BC
City
Abbotsford
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.
 

Gorby

Distinguished member
Joined
Nov 5, 2015
Messages
106
Reason
DX UMND/PLS
Diagnosis
08/2015
Country
CA
State
BC
City
Vancouver
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".
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,686
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I would also want a second opinion from an neuromuscular specialist.

Gorby offers some good advice.
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
791
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
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.
 

morleyde

Member
Joined
Apr 4, 2018
Messages
12
Reason
DX UMND/PLS
Diagnosis
9/2017
Country
US
State
MO
City
Saint Charles
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.
 
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