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daengle8

New member
Joined
Dec 23, 2007
Messages
1
Diagnosis
12/2007
Country
US
State
Texas
City
Fort Worth
Was told I had ALS, but after thorough tests in Houston, was told it was Progressive Muscular Atrophy (PMA). Weak arms and strength in hands. When I asked for a prognosis, the doc said that everone is different and only God can tell what I can expect. Disturbing to say the least. As I understand, PMA acts like ALS, only slower symptom progression. Can anyone let me know what to watch out for? Any foods or meds I should avoid or take? So far, I can function normally, except for the hand strength. God bless all of you.
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Hi Just a thought Have you has a MRI of your neck Pat
 

AHands

Distinguished member
Joined
Dec 10, 2007
Messages
206
Reason
PALS
Country
US
State
NC
City
Carrboro
Was told I had ALS, but after thorough tests in Houston, was told it was Progressive Muscular Atrophy (PMA).

What did they find in Houston that pointed to PMA instead of ALS? I assume they did EMG/NCS? It's my understanding that PMA affects lower motor neurons (spinal cord to muscle) only. ALS affects lower and upper (brain to spinal cord) motor nerves. Upper motor nerve damage shows up in your reflexes. With the EMG/NCS they are accessing the lower nerves, but maybe they can detect damage to the upper--I don't know--Good question to ask your doctor?

I've been to four neurologists:
  1. ALS, but get 2nd opinion
  2. Hasn't progressed, so ALS isn't so likely. Maybe MMA?
  3. ALS Specialist: IF it is ALS, it's atypically slow...
  4. Another ALS specialist: Come back and we'll talk in mid-January '08
As you now, there's no treatment for ALS, so try to eat and live healthily, and not stress out. I remember hearing the 50% at three years statistic and then feeling shocked to be told, "come back in three months, and we'll look at what's changed." My gosh, three months is a big chunk of time if I've only got three years left. How can I sit and wait three months? So I can come back in three months in a wheelchair and be told "Yep, ALS." It was maddening!

Well, it'll be three YEARS in March and, while I have continued to loose muscle, I'm still walking, working, bicycling (a lot!). I guess what I want to say is, don't panic, and learn to accept that there will likely be no definitive answer, diagnosis, treatment, etc...

There are a number of diseases that can mimic ALS. Some are very hard to detect. Some are treatable. As long as the treatment for those isn't likely to harm--why not try it?

The ALS specialist I saw last month ordered a cat scan, another emg/ncs and a bunch of blood tests. I get the impression he thinks its ALS but wants to rule out other things, even those I've been tested for before. HIV, Lyme, Syphilis, etc...Lyme in particular is hard to detect...it totally sucks to think that a positive for any one of these horrid diseases is better than a negative on all these lesser evils. It's also maddening to think he's had the test results since Thanksgiving, yet won't reveal them to me until our next appointment in January! I must assume those results must be negative--it would seem very irresponsible to sit on a positive result for something contagious.

Eat/live healthily. Research, ask questions, remain as calm as you can. 50% may not make it three years, but 50% DO--some a LOT longer. Those might not be great odds, but they're not impossible odds either. You've got a diagnosis of PMA, not ALS, so you're beating it already!
 
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