Diagnosed pma

araksya1957

Member
Joined
Jul 18, 2020
Messages
15
Reason
PALS
Diagnosis
06/2015
Country
US
State
CA
City
North Hollywood
Hey everyone, l wont to tell my story. I am 63 years old .My first simptoms begins in late in 2013, in my work l couldnt jump with two legs equaly. Then 4 , 5 months later l have walking and running difficulty. Late in 2014 l have first foot drop then after 8 months second foot drop.no crump no twitching. Olso l noticed thigh muscles atrophy very simmetricaly .in 2015 April I have emg there was written polyradycoulopathy or motor neuron diseas. I didn't see any neurologist , with that paper l go first appointment , that neurologist only look at paper and said you have als.and that day I go to deep depression. Then Sept in 2015 I go neurologist in kaiser he did again emg test , blood test mry., and give diagnoses als. But l have only legs problems and no upper motor neuron sing. In 2017 I go USC als reaserch center dr beyduin. He did emg and said no als but i dont know what. In 2018 i went kaser to my first neurologist , he said l dont know what.then l go kaiser als center the doctor said pma. I walk with can late in 2016, and with walker in 2018. Right now I walking with walker, but not going out , l don't want to go out.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,755
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
I’m sorry you find yourself here. It sounds like you are doing ok except for the legs? Make sure you don’t fall. Welcome to this forum.
 

araksya1957

Member
Joined
Jul 18, 2020
Messages
15
Reason
PALS
Diagnosis
06/2015
Country
US
State
CA
City
North Hollywood
There is somebody have pma diagnosis, please talk with me , l don't have twitching, and crump only two or three time in beginning, six years ago,. There is pma without twitching. My symptoms only legs weaknes es, atrophy and foot drop almost 7 years. And begin very simmetricaly weaknesses and atrophy together.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,911
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
PMA people are welcome to join in the discussion in the general forum. Often as I think you found they call what is technically pma lower motor neuron dominant ALS. I have very few upper motor neuron findings but I am also FALS and they always called ALS. I have been slow progressing but definitely asymmetric and now have weakness in all extremities
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,460
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Sorry to hear of your condition. Still, your disease has progressed more slowly than most. As Nikki says, often the current thinking is that PMA is a slower version of ALS so it is wise to plan for what would happen if you could not walk or use your arms, or needed respiratory support, but also to continue to live your life and do things that interest you. Of course, with the pandemic, there are not as many places to go, but if you can safely take walks in nature, etc., I encourage you to do so, because that is good for your mind and body. And there are many online groups and activities.

I think what I am trying to say is, everyone is different, so live as best you can and carpe diem. We don't know what your future holds, and new treatments are in the works. If you need counseling or medication to come to terms with this progression, those are still available to you. We're here for whatever questions you have.

Best,
Laurie
 

araksya1957

Member
Joined
Jul 18, 2020
Messages
15
Reason
PALS
Diagnosis
06/2015
Country
US
State
CA
City
North Hollywood
Hello, thank you for talking with me,after 7 years lam having some people with my back, pain and l couldn't stand strait around sink and wash dishes. I'm panicked. After 5,6 minutes my back giving up.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,831
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Hi. I'm glad you found your way to the forum. I have lower neuron dominant ALS, so I'm told. PMA was on the table for awhile. At any rate, my progression has been slow, but very painful. I can relate to your back pain. I live with it every day.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,702
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
PMA is so very close to ALS... it is often misdiagnosed as ALS. Often those who have PMA
believe it's ALS regardless to their findings.

As PMA is defined...

Progressive muscular atrophy (PMA), also known as Duchenne-Aran muscular atrophy, is a rare
subtype of motor neuron disease. Progressive muscular atrophy only affects the lower motor neurons.
It is a sibling condition to amyotrophic lateral sclerosis (ALS), which affects both the upper and lower
motor neurons.

Fortunately PMA isn't within the terminal 3 to 5 year protocol of ALS which is now also questionable
with so many current slow progression PALS.

*The prognosis for progressive muscular atrophy is better than with other similar conditions, such
as ALS. Those with progressive muscular atrophy have a longer life expectancy than those with ALS.

And many who have MS truly believe they have ALS.

Amyotrophic lateral sclerosis (ALS) (also known as Lou Gehrig's disease) often is mistaken for
multiple sclerosis (MS). In fact, they share similar symptoms and features, such as scarring around
the nerves (sclerosis), causing muscle spasms, pain, difficulty in walking and weakness.

The often confused world of MND.
 
Last edited:

araksya1957

Member
Joined
Jul 18, 2020
Messages
15
Reason
PALS
Diagnosis
06/2015
Country
US
State
CA
City
North Hollywood
I did so much researches about pma,upper motor neuron sign will emerge 2, 7, 10 ,15 or more years later nobody know,and can be restricted one body region for many years, my is in leg 7 years. But now l having whole body weaknes es, and my head like dizzi, is that pma
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,911
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
PMA can affect all body regions. We have upper and lower motor neurons that control all regions even bulbar. Your neurologist could tell by exam if you were starting upper motor neuron disease

dizziness is not a motor neuron symptom. we are not immune from other problems so you need to get that and your back pain assessed. They may well be completely fixable. Back pain is more often a separate issue or secondary to your weakness ( poor core strength, gait abnormalities etc)
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,831
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
MS is an autoimmune condition. ALS is not. I would question any doctor who cannot distinguish an autoimmune condition from a motor neuron condition. MS is one of the first things they rule out with an ANA and MRIs with contrast.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,702
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
The cause of multiple sclerosis is unknown. It's considered an autoimmune disease in which
the body's immune system attacks its own tissues. In the case of MS , this immune system
malfunction destroys the fatty substance that coats and protects nerve fibers in the brain and
spinal cord which will often present a mimic to ALS.

Back to PMA.
 

araksya1957

Member
Joined
Jul 18, 2020
Messages
15
Reason
PALS
Diagnosis
06/2015
Country
US
State
CA
City
North Hollywood
Hello everybody, lm very thankful for talking to me.almost 7 years I have legs weaknesses and atrophy,that's begins very simmetricaly and proximaly,then after year first foot drop then after7or8months second,distal weakneses.no twitching and crump.now I walking with walker.first ,5 years ago i have diagnoses als, but 2 years ago they said pma,.can be p ma without twitcing and crump.and someday l feel very strong, lm cooking, cleaning my room by leaning on walker washing, sometimes very hard but doing my best. I'm bathing aloun,l have chair .but I m in deep deep deprassion, im drinking cbd oil.talk with me please what do, I don't want go out, lm crying a lot.last year my neurologist check my reflexes, I don't have upper motor neuron sign, and he said Not pma but l don't know what.what you suggest, I don't want to go any doctor, I lost my hope.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,755
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Are you followed by an ALS clinic? Is there a counselor or social worker you can speak with?
 

araksya1957

Member
Joined
Jul 18, 2020
Messages
15
Reason
PALS
Diagnosis
06/2015
Country
US
State
CA
City
North Hollywood
Hello everyone, please somebody with pma, l first diagnoses als in2015,then pma in 2018. I don't have upper motor neuron sign, twitching and crump,and my symptoms weaknes es, atrophy ,on thigh muscles very simmetricaly,and begins together with weacneses,no reflexes only in legs almost 7 years.is sound familiar. Please answer me
 
Top