My Journey with MSA!

[Neillpedro]

This is my journey. Living with the very rare MSA (Multiple System Atrophy) disease has so many challenges both personally and for those around me. -

Not a single drop!

msainsouthafrica.blogspot.c...

[Marie_14]

Neill

I am sitting here in tears. I can relate to so much you have shared with everyone. My husband had signs of MSA long before we knew anything was wrong. Some of them just like yours. The trouble was he was in denial. He never said if he felt ill. It was simply things I noticed at first.

Then later it was things which the doctor noticed. He was told from the start he had PSP with signs of MSA. Just a month before he died he was told it was MSA. However even then there was a query if it was MSA alone. In the end it didn't matter. Either of them lead to the same place?

Thank you so very much for sharing your experience and thoughts with everyone. Please keep in touch?

I tell everyone about MSA and PSP by the way. I have never yet met anyone who knows what I am talking about. I did manage to get MSA on hubby's death certificate. No mean feat as they just wanted aspiration pneumonia! That's there too but I got my way about MSA as that was his last diagnosis. I do think he had PSP too but having read your information I wonder which was the dominant one. They are so alike in some aspects it's hard to say for sure?

I wanted to donate his brain for research but the consultant in hospital was totally uninterested and didn't pursue it.

Marie x

[Neillpedro in reply to Marie_14]

Sorry that it brought on tears, however I do understand. I think there was a little luck when my Urologist noticed the hand tremor and again the Neurologist was too wonderful. She would not give up until a definitive diagnosis was found. Most people say that MSA diagnosis can only be done with a brain biopsy. I disagree. One has to undergo many blood tests, x-ray's, and scans to "disprove" other neurological diseases that can relatively easily be diagnosed. What is left is MSA. The -P or -C to me is not important. It is only used to describe the predominant symptom at the time of diagnosis. Reading all the comments and thoughts of fellow sufferers, they all have parkinsonian and cerebellar symptoms. To me there is simply MSA. We all live in hope and prayer for a significant treatment or cure. Hugs from South Africa.

[Marie_14 in reply to Neillpedro]

No need to apologise for the tears I shed Neill. They did me some good. I felt like I was on your journey which was also my husband's journey.

It is excellent that you have chosen to be so open about your symptoms with everyone. We need more openness and honesty to get people to wake up to it...that includes doctors. I can understand they might not know about it because they have never had a patient with it and some are not Neurologists, but even when they are told what is wrong they don't for the most part look it up and learn about it. That makes me mad!

So does the awful hospital system that makes people wait for most of the day when they are so ill. I thought our system was falling apart until I read your account of what you had to endure. I am so sorry for you and all the other patients who go through this.

I am glad you have become a Catholic. The church has its failings too but we all need to look beyond that and realise there is someone greater than us out there. It brings me comfort and I can see it does the same for you.

Hugs back and take care of yourself.

Marie x