There are quite a lot of posts asking about disease stages, it's a common theme and understandably so. The standard answer is of course that with MSA everyone is different but I thought it might be instuctive for those who feel like it to compare histories.
Any takers ? I'll post mine a bit later.
My wife has had the symptoms for at least 25 years. She was diagnosed with MSA in 2016.
Deterioration has been slow, losing the ability to do something followed by a stable period.
Once lost it never comes back and each time we adjust to our new normal.
She has no mobility at all now and is moved around (inside our home and outside) with a wheelchair. Needs help to wash, dress and use the commode etc, etc.
We try to smile when we can and have no choice ( like many others ) other than to just get on with it.
my husband had what with hind sightwas his first episode before i met himwhile he was doing his National Service, the second was on the day of our daughters wedding neither were regarded as significant. but they were accompanied by things which were just oddities like the inabilty to do up buttons in a hurry, and my total failure to teach him to draw perspective. it was not until much later that concerning symptom appeared which led to a diagnosis of Pd'
My details pre Dx are a bit rough regarding dates as it's only after Dx I started looking back and had no diaries or other records.
2017 Difficulties with left hand/fingers with certain actions like putting keys in pockets of some coats. Not investigated as thought to be RA related.
2017 RBM = REM sleep behaviour disorder. shouting,laughing,moving about when dreaming.
2018 Voice sometimes quieter than normal as noticed by a few people.
2019 Urinary problems= Nocturia,frequency,urgency,urge incontinence(slight)
2019 E.D. February 2nd - funny how you remember certatain dates, eh guys!
2020 RBM causes me to fall out of bed 3 times. Bad injury to right hand.
2021 Feb. Wife comments on slight shuffle on left foot
2021 March. After a full year right hand finally pain free and good movement back. I test it against left hand with identical excercises when I realise left hand has significant dysfunction and I conclude I have a neurological problem. See GP next day, get DX PD. Testing reveals left side dysfunction ,leg , foot, toes,arm, hand, fingers.
2021 March depression,anxiety, becoming socially withdrawn
2021 June. Consultant confirms PD
2021 Nov. Neuro Physio does tests. further movement problems with walking and balance.
2021 Dec. Muscle weakness, both hands. Dropping things,unable to use cutlery properly.
2022 Jan. Everything getting worse every month. Voice quiet,hesitant, word finding problems,excess saliva,tremor, serious balance problems. Urinary dysfunction badly affecting QoL. coat hanger pain.
2022 Feb. Swallowing dificulties. Low blood pressure.
2022 Feb-May. All symptoms get worse, body temperature control goes silly, lots of sweating. Bowel problems
2022 May 26th. consultant says "MSA". Urinary retention, A&E and catheter.
2022 June. UTI
2022 May-Sept. All symptoms get worse. New symptom of Cold Hands. Unable to get out of setee. Unable to get up if I fall over. Right side leg/arm/fingers movement problems very noticeable. Can hardly write.
My husband was diagnosed in 2021 at age 77. Looking back his symptoms started about 25 years ago with RBD. Then gradually other autonomic dysfunction and odd, random symptoms. In 2017 he nearly passed out and it was then that we discovered the severe blood pressure fluctuations but still no diagnosis. Parkinson symptoms followed (they remain mild). He complains of stomach pain multiple times a day. He is still mobile and can handle self-care but cognitive decline has taken his independence. Although he has been dx with MSA-P, I also suspect Lewy Body Dementia. He lost his sense of smell about 20 years ago. I have read that sense of smell is usually preserved in MSA but not in LBD. Has anyone else lost their sense of smell?
I don't even know if there's an answer to that to be honest. 😔 X
i am always reluctant to post here as i appear to have had mild symptoms since i was diagnosed 3 yrs ago and its progression is slow. My walking is clumsy and is limited to 1 kilometre using either ski poles or more recently a walker. I was so much better a year ago. I suffer from fatigue daily but recover after an hours rest. My urinary system is poor and erratic as are my bowels .i have had 3 0r 4 bad episodes whilst driving ie evacuations. Luckily I can swim slowly and drive safely. Its MSAc i am told. My speech can get slurred when I am tired. I do consider myself very lucky when I hear about the average experience. I live alone so again, lucky. I fear for the future but try and stay positive, taking each day as it comes. I push myself to stay active daily, to get out of the house to do some activity, even to drink a coffee and do groceries. I take hyperbaric oxygen therapy once a week as well as a massage and i reckon these help me.
I wish you all well out there. Brian
I also have weekly oxygen therapy. I didn’t attend in August and felt the difference. Do you mind me asking if you have any autonomic dysfunction?
I don't have any autonomic dysfunction other than what i disclosed. I oftentimes wonder how would I feel if i discontinued the oxygen therapy! Thanks for your reply. I wish you the best in the future. Stay going every day stay as positive as you can . Remember that you are loved.Brian
I am in the same boat as you with symptoms and mind set. Try to keep safe and a positive attitude. I'm praying for you and all the others that have to deal with this awful disease. I have become a member of the MSA Coalition on Facebook and the DEFEATMSA.ORG. Both are good source of information
My dad always says his symptoms started about six years ago, autumn 2014. He cites a specific occasion when he was walking up a hill and all of a sudden he had absolutely no strength.
Since then the episodes of completely debilitating fatigue have grown more frequent and been harder to shake off. They seem linked to catastrophic and seemingly unpredictable drops in blood pressure, which no medication has been able to control.
(I would say, however that he has had digestive problems that long pre-date that walk in 2014 - though doctors have been slow to link up all of the symptoms. I used to think that he had undiagnosed IBS, but now think it is more likely linked to his overall autonomic dysfunction).
I first became aware of more ‘Parkinsonism’ type issues - slow movement, stooped gait - around three years ago. There has also been some gradual cognitive decline over this period. Not dementia, just a deterioration of the executive function that makes him less able to cope with stress or change.
Thank you for sharing. My husband was diagnosed 3.5 years ago but there were signs before that. He also tried climbing a hill, only to fall down and not be able to make it back up. When we walked the kids home from school he would walk behind us. It used to drive me crazy but now I know he was watching our feet movement. I think it helped him with his walking.
He is independent today but needs a walker and we also use a wheelchair when going out because it’s easier since his walking is very limited. His speech is somewhat slurred.
I am worried about the next stage.
All my best to and your dad.
Pure Autonomic Failure 
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7 years and the struggles now over
BEST WISHES for as good a Christmas and New Year as possible
