Old 04-06-2009, 06:28 PM #1 (permalink)
New Member (Say Hi)
 
Join Date: 2009
City: houston
State: tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 1
dclark is on a distinguished road
dclark dclark is offline
New Member (Say Hi)
Join Date: 2009
City: houston
State: tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 1
dclark is on a distinguished road
Default Symmetrical weakness with PMA?

Hi everyone, new poster here.

I have been suffering from weakness and neurological symptoms (tingling, twitching, buzzing sensations, etc) for over 7 years. I was originally diagnosed with CIDP and treated with IVIG and steroids, which slowed down the progression, but hasn't stopped or reversed it. I have not exhibited any upper motor neuron symptoms to this point, and no swallowing or breathing issues.

My current neurologist has suggested that if a new round of IVIG doesn't reverse things, then I might be looking at some form of "motor neuron disease".

I guess she is hinting at PMA. But, since my weakness has been very symmetric (proximal and distal), I wonder if PMA is really a possibility?

Has anyone with symmetrical weakness been diagnosed with PMA?

Thanks!
Dave
dclark is offline  
Old 04-07-2009, 10:06 PM #2 (permalink)
Very Helpful Member
 
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
laurel laurel is offline
Very Helpful Member
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
Default

Hi Dave,
I don't know much about PMA but my husband did have one query of PMA in the beginning of being diagnosed with CIDP, but my husband has CIDP--MADSAM and has been treated monthly with 1G. per kilo of his weight for the last 18 months. Just wondering if you have had ongoing treatment or just intermittent? I have read of very few CIDP'ers who have actually gone into true remission. It seems most require ongoing treatment. And it seems that there are many who fail to respond to IVIG after a few months and some of those switch over to plasmapharesis. And there is also a group of CIDP'ers who actually become weaker with the steroids--depending on the variant they have. And then there are those that have had good success with their neuro's adding things like Cellcept to their medication regime. I am a little perplexed that your neurologist is considering a motor neuron disease since so many of your symptoms are sensory because sensory symptoms are not usual in motor neuron diseases. Could you explain what your history and treatment as been?
Laurel
laurel is offline  
Old 04-09-2009, 09:02 PM #3 (permalink)
Member
 
Join Date: 2007
City: Mays Landing
State: NJ
Country: US
Diagnosed: 02/2007
Interest: He is home with Jesus 6/22/09
Posts: 355
hopingforthebest is on a distinguished road
hopingforthebest hopingforthebest is offline
Member
Join Date: 2007
City: Mays Landing
State: NJ
Country: US
Diagnosed: 02/2007
Interest: He is home with Jesus 6/22/09
Posts: 355
hopingforthebest is on a distinguished road
Default Pma

My husband has PMA and there is a PMA support site on the forum. He has no use of arms, hands and neck is unable to support without brace. He also is on bipap 24/7
His legs are good and strong but supporting his upper body is difficult.
hopingforthebest is offline  
Old 04-09-2009, 09:03 PM #4 (permalink)
Member
 
Join Date: 2007
City: Mays Landing
State: NJ
Country: US
Diagnosed: 02/2007
Interest: He is home with Jesus 6/22/09
Posts: 355
hopingforthebest is on a distinguished road
hopingforthebest hopingforthebest is offline
Member
Join Date: 2007
City: Mays Landing
State: NJ
Country: US
Diagnosed: 02/2007
Interest: He is home with Jesus 6/22/09
Posts: 355
hopingforthebest is on a distinguished road
Default Ivig

Forgot to add that he tried for one year the IVIG to see if it would help and it did not
hopingforthebest is offline  
Old 06-18-2009, 01:52 PM #5 (permalink)
New Member (Say Hi)
 
Join Date: 2009
City: Trussville
State: Al
Country: US
Diagnosed: 12/2001
Interest: I have been diagnosed with another motor neuron disease.
Posts: 2
little willie is on a distinguished road
little willie little willie is offline
New Member (Say Hi)
Join Date: 2009
City: Trussville
State: Al
Country: US
Diagnosed: 12/2001
Interest: I have been diagnosed with another motor neuron disease.
Posts: 2
little willie is on a distinguished road
Thumbs up Hey Dave

I too have experienced the weakness and muscle loss throughout my entire body. It has kind of been a mix of what is weaker and where (right arm stronger than left, left leg stronger than righ, etc.) but i continue to carry on. i don't walk much and when i do it is with a stroller around the house. i use a powerchair to get around the neighborhood and to church. Sometimes my wife will take me to Walmart or maybe if i am good she will take me to Homedepot or Lowes so i can dream. Thanks for your post. You are the first person that has what seems to be the same conditions as me. I was 48 when i got my first diagnosed in 2001.
I went through the gammut of diagnoses before going to ALS Clinic in Houston to Dr. Apel. He is the one who gave me the diagnosed of PMA. that was in 2004 so i have been being treated as such. i still use the supplement coctail that Dr. Apel gave me along with a couple of others to help with the neuropathy pain i suffer from. i would like to swap ideas with you some time if possible.
Look forward to talking again.

Bill
PS Has anyone heard anything on the tests for ACE 031 from Acceleron pharm?
little willie is offline  
Old 07-06-2010, 10:23 AM #6 (permalink)
New Member
 
Join Date: 2010
City: Birmingham
State: England
Country: UK
Diagnosed: 06/2010
Interest: I have been diagnosed with ALS.
Posts: 13
mally is on a distinguished road
mally mally is offline
New Member
Join Date: 2010
City: Birmingham
State: England
Country: UK
Diagnosed: 06/2010
Interest: I have been diagnosed with ALS.
Posts: 13
mally is on a distinguished road
Default Re: Symmetrical weakness with PMA?

Hi

I have the same thing too-the weakness and atrophy is distributed through many muscles in my body and is more or less symetrical. My strength varies through the day too-are you affected that way? My neurologist says says I have an A typical lower motor neuron disease. and that many muscles in my body are only 'slightly' affected. He says that this is not a normal presentation. I also have a high score for myasthenia gravis.

Mally
mally is offline  
Closed Thread

Tags
breathing, breathing issues, diagnosed, ivig, motor neuron disease, motor neuron symptoms, neurologist, pma, progression, steroids, swallowing, symptoms, twitching, weakness


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
possible als from one leg weakness? jensmith Do I Have ALS? Is This ALS? 8 02-09-2014 06:59 PM
The Age Old Question: Perceived Weakness Vs. Clinical Weakness max777 Do I Have ALS? Is This ALS? 30 01-31-2014 01:23 PM
For The New People: Perceived Weakness and True Weakness notme Do I Have ALS? Is This ALS? 29 11-07-2012 08:02 PM
weakness in body/weakness in neck/mouth edwards5257 Do I Have ALS? Is This ALS? 9 07-18-2012 05:56 AM
Arm weakness BarryG People With ALS - "PALS" 25 07-05-2010 12:12 PM
symmetrical weakness katmomma Do I Have ALS? Is This ALS? 3 01-26-2010 08:36 PM
leg weakness GlennaB General Discussion About ALS/MND 13 12-19-2009 11:39 AM
Has anyone had symmetrical pain in both calf muscles peteborota Do I Have ALS? Is This ALS? 2 12-16-2009 01:04 PM
Is THIS weakness?! Blizna Do I Have ALS? Is This ALS? 6 10-20-2007 02:49 PM
Weakness vs "feeling of weakness" ptich General Discussion About ALS/MND 1 08-11-2007 11:58 PM


All times are GMT -5. The time now is 06:32 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016