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admlizkirk

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May 5, 2009
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Learn about ALS
Country
US
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Indiana
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Muncie
Hello everyone. I don't know if you remember me, but I was posting in May while I was at Mayo clinic rochester about my mom going through tests for ALS.

They did say she didn't have, but said they were pretty sure she has MSA, but not 100% sure.

Just an update. My mom went downhill quickly after we got home. She is now not able to stand, and we are fighting with getting her sinemet regulated. I was, at first, very happy she didn't have ALS, but then realized after getting her home that MSA is not very different of a disease.

The only difference I can tell is that it might be a little slower progression than ALS, but that varies from patient to patient.

I treasure each day I have with my mom and still pray for a cure or healing for her. I did find that you all are very lucky that ALS has gotten the prominence that it has. Nobody knows what MSA is, and when you say, well its very similar to ALS, people say, "oh ok"

I am not diminishing anything with your disease, but it is frustrating.

Just wanted to let you know what has been going on. Thanks
 
Thank you for updating us...... I'm sorry that your mom is declining. What is sinemet, is that meds for MSA?
 
Sinemet

Yes, actually a Parkinsons drug, which MSA is considered a Parkinson's syndrome.

Its a mixture of L-dopa and carbidopa to help with stiffness and strength in legs etc

It has some severe side effects with mental things. So getting the dose right is very important.

Thanks for your kind words
 
Neuro says he thinks she may have ALS

Or some other MND type disease. Still will not say she has MSA (though he doesn't agree with Mayo's findings)

He said "Well, i will never know what she has"

They said she needed to go on a PEG tube soon. She has been adverse to that, because she has seen it as a way of prolonging life artifically. Well, she may change her mind now.

Debra
 
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