Status
Not open for further replies.

Debbie53

Active member
Joined
Aug 16, 2008
Messages
86
Reason
Lost a loved one
Country
US
State
Colorado
City
Greeley
Hi ,

It may seem strange to still need answers (my dad died 4 weeks ago) but I do. What eats at me is that he never got a definite diagnosis. The first neuro, end of July, said he thought it was PMA, the second, beginning of October, said no, he thought it was Guillane-Barre. From doing online research, I'm more confused than ever. It sounds like Guillane-Barre comes on much more quickly, and doesn't seem to explain the great weight loss and muscle wasting. Does anybody out there know how these 2 diseases could be similar enough to both be possibilities? It is a moot point now, and I know I need to "move on," but it's easier said than done. :confused:
 

ptich

Distinguished member
Joined
Jan 12, 2007
Messages
171
Country
US
State
California
City
Mountain View
Debbie, I am sorry to hear about your father.

You should remember that the medicine in general is not a precise science, and neurology is the least precise of them all, and most doctors make it even less precise... Knowing that, I think you should move on, or at least not to try to dig deeper into your late father's diagnosed.
 

lydia

Senior member
Joined
Jan 25, 2007
Messages
677
Country
US
State
ny
City
buffalo
Debbie,
I, as well as some friends, have experienced the death of loved ones where there was considerable uncertainty regarding the details of their health and what lead to their passing. Each of us spent time trying to make sense of those details in a wide variety of ways. Some of us spent an extraordinary amount of time searching, others not so much. Some of us got answers, some didn't. I view this searching and sense-making as one means of reaching closure and acceptance....as long as that closure isn't dependent on answers....sometimes you don't get any...With that said, I can't answer your question about the two possible diagnoses because I don't know anything about either. I do wish you the best of luck in making sense of what happened to your father and hope that you find what you are looking for.

Lydia
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Debbie- you are right it is hard to move on without answers. My FAL passed away peacefully in his sleep some years ago and every once and awhile I still wonder what it was. Answers make closure easier, I think, but you will still miss him. Give yourself time. And reach out to us whenever you feel the need! Hugs, Cindy
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
Debbie

Guillian-Barre is an acute demyelinating disease that hits one rapidly (within days). It will not cause muscle atrophy in that time. It typically resolves on its own within months and only becomes life-threatening if it affects the nerves involved in breathing. Thre is a chronic dymelinating disease called CIDP, which typically presents itself insidiously like ALS. Symptoms would include muscle weakness, muscle atrophy (but that can be variable), muscle twitching and diminshed/absent reflexes. CIDP is treatable by the way.

PMA is a variant of ALS that affects only the lower motor neurons. Symptoms would include muscle weakness, muscle atrophy, muscle twitching and absent reflexes.

Therefore the symptoms of CIDP and PMA can be similar but what distinguishes them is the EMG (they will be different) and the fact that CIDP is treatable.

I hope that helps.
 

Debbie53

Active member
Joined
Aug 16, 2008
Messages
86
Reason
Lost a loved one
Country
US
State
Colorado
City
Greeley
Thanks, Wright and everybody else, for caring. I don't even know if my dad had an EMG, but I'm going to find out. I know my dad would say "What the *#*^ difference does it make now?" but that's just the way I am. Have a good day, all.

Debbie
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Debbie,

I'm very sorry you lost your dad. I know what that's like.

From what Wright posted, if the first neuro thought your father had PMA, he must have done an EMG to find lower motor neuron involvement. At least that is my suspicion.

The second neuro probably had his reasons for suspecting otherwise. It wouldn't hurt to ask and I'm sure the doctors would be understanding with your wanting to find some answers.

Hoping the best for you!

Zaphoon
 

Debbie53

Active member
Joined
Aug 16, 2008
Messages
86
Reason
Lost a loved one
Country
US
State
Colorado
City
Greeley
Thanks, Zaphoon. I think I will talk to them & try to figrue it out.

Debbie
 
Status
Not open for further replies.
Top