Multisystem Atrophy

[livingwith]

My husband is only 48 years old. He went in for cancer surgery and came out with so much more. He seemed to deteriorate so fast. There were many hospital error. We just could not find any answers. One day we were told he has MSA. I had never heard of this. When we looked it up, he had most all the symtoms. He has been treated for them for years. The doctor told me that the symtoms can start 10 - 20 years before the disease really takes over.
I have not been able to find out anything concerning ...Read the full article

[carnation0979]

I am sorry for what you are going through. My family and I have been watching my 82 year old grandmother go through the same disease. I guess it is more expected of someone of her age, since she is elderly. After doing some reading, I have found that the disease is normal in people your husband's age.

I wish I could tell you that it does get better, and that there is a cure. Unfortunately, that would be a lie. It took doctors nearly 10 years to finally diagnose her, and now she is at the point that she is ready to give up. She is now confined to a wheelchair, otherwise she loses her balance, causing her to fall. I look back at the person she was 10 years ago...and it is such a dramatic change. She was such an active woman, always spending time with my young cousins, singing in our church choir, helping my grandfather in his garden...First she had to use a walker, but now she has been confined to a wheelchair. Her speech is slurred, she loses her balance (without the wheelchair), she is forgetting simple things, she has a difficult time swallowing. My grandfather still works part-time, so she spends half of her day now laying on their couch until he can come home to help her.

When she was first diagnosed with MSA a few months back, I found some information on the organization's website. MSA is also known as Shy Drager disease. There is some information on their website that might answer some of the questions you are having. I will warn you, though. The prognosis is not positive, but at least it prepares you for what to expect in the near future.

Here is the link: http://www.shy-drager.org/msa_faq.htm#progression

[lilacs]

I am so sorry to hear about your husband. I hope he is doing okay still, as I am writing this many months after your original post. I just wanted to give you the perspective of a daughter who has been through this. My father has had MSA for nine years, so I would have been about 12 when he first began to get ill. However, we have not had a correct diagnosis until just recently. It is truly devastating. I found it hard to deal with the original diagnosis of multiple sclerosis when I was in my teens, and now that I know my father really is dying and likely very soon, I am devastated. I can't imagine having to deal with this at 14, although I did but since we did not have the right diagnosis it didn't really occur to me that my dad could die from this disease. If she is feeling what I feel, she will likely feel overwhelmed and incredibly sad. Her schoolwork may suffer, and I don't think that this is her fault. It is just so hard to concentrate with all of the questions and feelings going on. Luckily, your daughter has you to rely on for support and needs you to be strong for her. My parents are divorced, and knowing my dad has no one living with him to take care of him weighs heavily on me. I know I have so many questions and sometimes it feels like I have no one to talk to because I don't want to depress everyone around me. My father is nearing the end of his time on this earth, and talks frequently about "when he's gone." We have had to get his affairs in order, and this made the diagnosis all the more real to me. I would recommend you do not involve your daughter in these sort of things if at all possible, because even at 21 it is so hard for me to deal with that I feel as though my heart is going to break. My heart goes out to you and your daughter during this trying time. Also keep in mind that my father is very far along in the progression of the disease, so this advice may not be relevant to what you are going through right now but I hope it helps even a little.