Multiple System Atrophy and me
I am sick since 1999 (I'm 59). I was diagnosed with MSA in September 2002.
I was a very active woman, professionally and cultivating my garden.
As for all incurable disease, I made the point, organized my life according to MSA. I trust my doctors... I stick carefully to their advice and the advice of patients I have met within the ARAMISE Association. The disease has evolved, I too!! I am exhausted by that fatigue, pain and recurrent chest infections. But I have a good morale, I live with it, accept it.
I have a goal: ensuring that the research advances, while increasing access to information and support for patients and their families.
Written by albertebonnet, published 2 days ago.
In hindsight, there were signs of the disease that I wasn't taking into account. I ask myself a lot of questions about this: falls in the yard, what I called a strange fatigue, my right leg which would sometimes fail me. But I would manage to explain everything.
And then there was a violent incident: losing consciousness, loss of control in my limbs, the inability to move, to breathe, and blindness; I had the night to recuperate a little bit. Since I live alone, I called my doctor the following day. Then started this long period with doctors being more or less sympathetic.
Very severe orthostatic hypotension, brutal urinary incontinence, constipation like I had never seen before, and, a "strange" fatigue.
I was diagnosed with "nervous depression," often "faking"...,
Nothing as far as endocrinology is concerned, nothing in the internal ear _I would lose my balance_, I move directly to the "diagnosis of chronic fatigue" which makes people around me smile (myself included), with a supposedly normal CAT scan!!
A friend who was a doctor recommended I met a neurosurgeon.
The neurosurgeon asked for an emergency arteriography/angiography of the brain, he called me at home to tell me that the positive element was that there was nothing that required surgery and sent me to a neurologist, I told him I had already seen three, so he sent me to the one that I still see today.
In July 2002, this neurologist looked at my supposedly "normal" CAT scan, examined it, and found it "not normal" and gave a name to my pathology "multisystemic atrophy" that was to be confirmed in September with a urological test, etc... He gave me alpha fludrocorisone, physiotherapy and rules to follow in my daily life. I understood that it was bad since he kept repeating that what worried him was the fact that I lived alone?? I was happy to be able to give a name to my pathology even after having read articles on the internet.
After wandering through diagnoses, I started living with the reality of "rare diseases".
Luckily, I met with the Shydrager group put together by Pam Bower. A true life line.
With an Italian patient, we decided to create Shydragers.
Then the ARAMISE association _European in scope_we had Belgian, Swiss, Italian, Spanish, Maghreb patients.
We met young researchers who were full of passion and motivated whom I would like to name here and give all my greatfulness: Gwenaëlle Fillon and Pierre Olivier Fernagut. Thanks to donations, we have contributed and continue to help research.
I would continue my testimony with the birth of Rare Diseases Plan, of the Reference Centers, of the Competency Centers in France, the explosion of research worldwide during this decade and the continuity..
First, I wanted to thank the doctors with whom we work, Professor Rascol et his team in Toulouse, Professor Tison et his team in Bordeaux, without forgetting the teams from the Competency Centers.
We cooperated with patients groups and families, and internet groups.
There is no competition between us, we try to be strong and be grateful for the work done by patients and their families, whether it is through volunteering or financial help. I don't forget that even if these patients are no longer with us, their families are still here. I want to pay homage to our friends who have left us, who were so courageous, and the pain of the families. The association was built with them and it will continue. This is what we owe them.
To finish, never forget the pace of research is different from the pace of the disease. We should not aim at the wrong target.
I have been sick since 1999 (when I was 59). I was diagnosed in September 2002. I was a very active woman professionally, who would take care of her garden.
As with all incurable disease, I thought about it and I have organized my life based on AMS. I trust my doctors.. I follow their advice very closely as well as those from patients that I met through the ARAMISE association. The disease has changed, and I have too!! I am drained by this constant fatigue, the pain and repeated pulmonary infections.
But my moral is high, I live with it and I accept it.
I have one goal: help research move forward, and that information and support for patients and their family be available.
Written by albertebonnet, published 2 days ago.