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peggyboop

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Mom has muscle weakness in hands, arms, legs & feet, no other symptoms of ALS, yet has been diagnosed with ALS. Does anyone know what benign ALS is?
 

liz

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One of my docs described my ALS as "mild". I think they use this type of language to discuss slow progression. It doesn't feel "benign" to me - just not as fast as what some others experience.
 

Peg B

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Hi Jeff and Peggyboop,


Mine is discribed as possibly "Atypical ALS" or it may still be MMN. (Multifocal Motor Neuropathy) in case others don't know of it. I appreciated the webpage you noted and it said the "benign ALS" is not a "medical term" but it really sounds like it gives the wrong impression and there really is no such thing, it just means "slow progression." But even if it walks slow and doesn't quack - it is still a duck.

Peggyboop I would question the term, as it might be a problem with qualifying for benefits. Just my two cents. Peg
 

peggyboop

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Hi Peg B.
Not sure what you mean by the benefits thing. I was looking for someone that may have the same symptoms going on!
 

Peg B

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Hi,

I was thinking if she applies for SS disability or something like that the DX is confusing and will make it hard for her to be eligible if she in fact does have ALS. Did she have an EMG and other tests? Peg
 

peggyboop

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Hi Peg, it's Peg,
Since my Mom is 75 yo, she is already collecting SSbenefits. We have had EMG, Nerve Conduction studies, spinal tap, etc, etc, etc. More recently I have requested a Lymes disease test, we are waiting for the results of that. My parents have really good benefits thru Medicare & BCBS. Mom has started in home PT twice a week, and has gotten thru a couple weeks now. The therapist says that she is showing some inprovement, but I hate to get my hopes up. He says he would like to get her walking again on her walker vs being mostly in her wheelchair. I would love for that to happen, but don't know if i am hoping for too much!
The weakness in her arms & legs are the main symptoms. No other symptoms of ALS. I feel like I am on a mission to find out & fix whatever she may have.
I am an eternal optimist & beleive that things can get better & my siblings just want things to not progress.
Thanks for listening!
Peg
 

Peg B

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Hi Peg,

She must have signs of upper neuron dysfuction (shown in the tests) to get the ALS lable. I have no signs of upper neuron yet (they are going to look again April 3). So for the last year I have been on IVIG treatment/test just in case I have MMN. Have they ever mentioned those treatments to see if she may have MMN? She has good insurance and my insurance pays. They are 10,000 dollars a pop and I get them at home X2 a month. They accept a bit less, as that what the insurance pays. It is a 4-6 hour infusion of good human blood products. It is suppose to show great improvement if a person has MMN and not ALS. I have shown some improvement in some areas, I can now move my baby finger a bit, and I do not tire as much right after treatment. But other fingers are beginning to curl and I have lost some other mobility.

The good news for me is it is very slow even if it is ALS. (Symtoms began 2002) It may be worth asking about MMN and IVIG. Also you can find lots of info on the net re: these two things. Best Wishes and thanks for clarifying we share a great name:-D. Sincerely, Peg
 
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