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dclark

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Joined
Jan 16, 2009
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1
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Learn about ALS
Country
US
State
tx
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
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
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Other
Country
CA
State
Western Canada
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
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
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

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
Ivig

Forgot to add that he tried for one year the IVIG to see if it would help and it did not
 

little willie

New member
Joined
Jun 17, 2009
Messages
2
Diagnosis
12/2001
Country
US
State
Al
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?
 

mally

Member
Joined
Jul 6, 2010
Messages
13
Reason
PALS
Diagnosis
06/2010
Country
UK
State
England
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
 
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