My mom gets her findings tomorrow-MSA or ALS

[admlizkirk]

One of the docs in the long line of docs we have been seeing up here at Mayo said to my mom the other day, "So they think you have MSA, is that right?"
My mom looked at them and said, "We've not been told anything yet."

I know they have been testing thinking ALS or MSA, but what really is the difference here? they both look pretty awful, I know, but the google searches I find are that MSA progresses a little slower than ALS and acts more like Parkinsons than ALS.

Does anyone here know anything about MSA and how it differs?

 

[laurel]

Just from reading, I read this which I'm sure you have seen too. "Multiple system atrophy (MSA) is the current name for disorders once known individually as striatonigral degeneration, sporadic olivopontocerebellar atrophy, and the Shy-Drager syndrome. MSA is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure (such as lightheadedness or fainting spells, constipation, erectile failure in men, and urinary retention) combined with tremor and rigidity, slurred speech, or loss of muscle coordination. MSA affects both men and women, primarily in their 50s. It can progress swiftly or slowly, but people with MSA generally survive for 9 years after the appearance of symptoms. There is no remission from the disease.
Is there any treatment?

There is no specific treatment for nerve degeneration in MSA. Levodopa, used to treat rigidity and tremor in Parkinson's disease, may offer some help. However, striatonigral degeneration does not respond well to levodopa. Dopamine and anticholinergic drugs may be prescribed to treat spasms. Orthostatic hypotension may be treated with flucortisone and other drugs that raise blood pressure. Increased dietary fiber intake or use of laxatives may relieve constipation, and drugs or a penile implant may help with male impotence. A routine of stretching and exercise can help retain muscle strength and range of movement. An artificial feeding tube or breathing tube may be surgically inserted for management of swallowing and breathing difficulties.

What is the prognosis?

MSA is a progressive disorder and most patients have a life expectancy after diagnosis of about 10 years or less."

Hopefully others will chime in who have experience with MSA. Good luck and keep us posted.
Laurel

 

[Zaphoon]

Laurel,

Thanks for that very informative post on MSA. You are brilliant!

Zaphoon

 

[admlizkirk]

My mom does not have ALS, according to the doc at Mayo. they said she may have MSA, but it may be a mixture of things, but they have ruled out ALS. Just wanted to keep you posted.
Thanks

 

[crystalkk]

No ALS is great news. Did they give you the reasons why they ruled it out? Are they still doing testing trying to figure it out or are you going home today as planned. Does she have atrophy in the part of the brain that causes MSA? You must be very tired...frustrated not knowing exactly what it is and happy that it's not ALS.

 

[admlizkirk]

They didn't mention atrophy in the brain, although they said it was more of an upper trunk type thing happening and with her brain, though her muscles are affected.

They said if she has a muscle biopsy they might be able to narrow it down. They want to start her on Seniment (which is a parkinsons drug) so I think they are under the impression she has more parkinson type of symptoms than anything. Of course MSA is a parkinsons syndrome.

I am pretty confused overall though!
We are home now though. If she goes through a biopsy, it will be here at home.

 

[Zaphoon]

I'm very glad they have ruled out ALS for your mother. I hope she responds well to the treatment they are prescribing.

Zaphoon

 

[mucckey]

I am new at message boards. I occasionally check information about MSA becasue my dad died 5 years ago from it. I continue to pray for a cure becasue it was the most hideous illness imaginable.
His situation was: some unsteady gait and some muscle weakness in the legs. This probably went on for a year but he felt it was natural aging as he was in his 70's. But he got worse and began taking just 'baby steps'. Two neurogists and several brain scans diagnosed 'atypical Parkinsons'. Tried the usual Parkinson's meds; they did nothing. Soon he needed a walker, then a wheelchair. The next year was pure hell. It paralleled ALS with loss of muscle control. Not only was he bed bound, but he could not move. Swallowing became a huge issue. In the end it was a matter of inability to swallow at all, or (like ALS) he could not expand his lungs to breathe. Hospice was there at the end. They felt it was very similar to ALS. I don't know which is worse. And his mind was there but when you can't communicate it is so hard.....
This was the hardest thing for us to get through. Doctor's said it was 'luck (unluck) of the draw.
I hope your mom is doing better. Five years is a long time in the medical field.
I can answer and questions if you have them.
He was seen in south Florida where he lived, and also at Emory in Atlanta.