PMA becoming ALS

Status
Not open for further replies.

mrd1956

Active member
Joined
Jun 18, 2011
Messages
31
Reason
PALS
Diagnosis
07/2010
Country
US
State
California
Hello Good People::p

I was recently diagnosed with PMA at the Mayo Clinic in Scottsdale. All of this was subsequent to various neurologists theorizing that I had ALS, Kennedy's Disease or BAD. My question is: have any of you had your PMA become ALS? What is the likelihood of this happening from what you know?

MrD 1956

"In the fell clutch of circumstance, :)I have not winced nor cried aloud."
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
In my humble opinion, deal with one disease at a time and enjoy every day! Don't waste your days thinking of what "might" happen. Be thankful you don't have ALS and get answers to questions like this from your team of doctors rather than speculations from a public message board. I'm sorry for your PMA diagnosis.
Best wishes
 

mrd1956

Active member
Joined
Jun 18, 2011
Messages
31
Reason
PALS
Diagnosis
07/2010
Country
US
State
California
Thank you Ms. Pie for your response. And yes I am most gratetful to have dodged the bullet! Just trying to do as much research as possible to stay ahead of the beast. Some physicians are worth asking; others not so much. How are you faring? Best Regards.
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
I'm living proof that an initial diagnosis of BAD can develop into ALS. The good thing about my case, was that, given the length of time that it took to finalize the ALS diagnosis (nearly two years), it was obvious that my progression was very slow. It took nearly four years post-official-onset-of-symptoms before I was no longer able to walk and over three years before I lost the use of my arms (where everything started). I know of several other cases that were like mine and their progression stories are similar.

Even today, just a couple of weeks shy of the five-years-post-onset-of-symptoms, I still have no bulbar symptoms, speech is still clear (although limited a bit in strength by respiratory symptoms) and I eat whatever I want. Given the fact that I could make a persuasive case that I'm really six years post-onset, I'm well into the slowest ten percent of ALS progression.

Hopefully, your case will remain PMA only, but my case should offer you some encouragement should your diagnosis change to ALS any time in the next couple of years or so. Good luck.
 

mrd1956

Active member
Joined
Jun 18, 2011
Messages
31
Reason
PALS
Diagnosis
07/2010
Country
US
State
California
And thank you trfogey. Hang in there!
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
I'm doing pretty well, happy, still working part time but that will end at the end of the year. Not the happiness, the part time job. I am blessed! Thank you for asking! :)
 

MrsClose1

Member
Joined
Jun 14, 2011
Messages
13
Reason
Loved one DX
Diagnosis
01/2011
Country
US
State
CA
My husband was diagnosed with PBP in January. Here we are in October and he has a peg tube he can no longer eat, he can barely take a few steps, he can not hold his head up anymore and his right arm is starting to falter. He uses his Bipap everynight and has to have me assist in turning in bed. This disease is so distructive and inhumane. It hurts me to see him slowly degenerating.:cry:
 

maryhahnward

Distinguished member
Joined
Jun 17, 2009
Messages
441
Reason
CALS
Diagnosis
06/2010
Country
US
State
NC
I'm living proof that an initial diagnosis of BAD can develop into ALS. The good thing about my case, was that, given the length of time that it took to finalize the ALS diagnosis (nearly two years), it was obvious that my progression was very slow. It took nearly four years post-official-onset-of-symptoms before I was no longer able to walk and over three years before I lost the use of my arms (where everything started). I know of several other cases that were like mine and their progression stories are similar.

Even today, just a couple of weeks shy of the five-years-post-onset-of-symptoms, I still have no bulbar symptoms, speech is still clear (although limited a bit in strength by respiratory symptoms) and I eat whatever I want. Given the fact that I could make a persuasive case that I'm really six years post-onset, I'm well into the slowest ten percent of ALS progression.

Hopefully, your case will remain PMA only, but my case should offer you some encouragement should your diagnosis change to ALS any time in the next couple of years or so. Good luck.
I second everything you said. My husband's journey is very similar to yours.
 

MrsClose1

Member
Joined
Jun 14, 2011
Messages
13
Reason
Loved one DX
Diagnosis
01/2011
Country
US
State
CA
My husband was diagnosed with PBP in January. Here we are in October and he has a peg tube he can no longer eat, he can barely take a few steps, he can not hold his head up anymore and his right arm is starting to falter. He uses his Bipap everynight and has to have me assist in turning in bed. This disease is so distructive and inhumane. It hurts me to see him slowly degenerating.:cry:
I also forgot to mention he can no longer speak so communication is impossible in the dark. Wrote this so fast early this morning forgot to mention the speech part.
 

Al

Legendary member
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
MrsClose1, you might get more responses if you posted in the progressive bulbar palsy forum.

AL.
 
Status
Not open for further replies.
Top