Multiple System Atrophy Trust

Hi, I'm new here

My name is Carol, my husband John of 51 years was diagnosed with MSA in May of last year. I have only just discovered the MSA trust via the Parkinson nurse. John will be 80 in June, was really quite fit until he was 74 when his health started to deteriorate. It has taken a long time to get a diagnoses. We just take a day at a time and try to stay positive. (Best not to dwell on things).

Does anyone else suffer with fatigue? I've not seen it mentioned.

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Sorry to welcome you here but glad you found us. Oh yes fatigue is a serious problem for a lot of people. Often one part of the day is better or worse than another and it is best to make use of the more energetic times to do things..No good trying to force yourself to do things.MSA varies a lot from one person to another. You will need to know as much as you can about the disease because it is so rare they most of your medical people will not have met it before.

You can rely on the MSA Trust nurses

I think two good bits of advice are Do it now and never take no for an answer

FredaE

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Hi Freda

Thanks for reply, I will be talking to the MSA nurse as soon as

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Carol print off an explanation of the symptoms of MSA for the times you are asked what it is!! Give it to them so they can read it. Even doctors in hospital don't have a clue and nurses the same! So be prepared.

Yes fatigue is part of it Carol.

Take care if yourself. Do you know what you are entitled to?

Marie x

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Hi Marie, It's so frustrating that the Medical profession don't understand. Yours is a good idea, thank you

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Hi Carol, welcome. My dad has MSA and is 81. He also suffers with fatigue. His palliative care team suggested a fatigue management course which helps the person understand and then manage the condition. I don't know whether you are able to access a similar kind of service? It helps if he has fresh air each day and has an activity to look forward to. I am sure you will get other suggestions from others on this forum. The specialist MSA nurse is also very helpful. Sending warmest wishes to you and your husband. It can be a very difficult conditions to manage as a carer and support received through this site and the people around you are invaluable. With love. Helen

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Hi, John was actually first diagnosed with CFS/ME. He saw an expert for about 12 months. It did'nt help too much, but she did pick up on the low blood pressure, and we went from there. All the best to your dad.

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Hi Carol, welcome to the forum where sufferers and carers can share and ask.

My wife was diagnosed 18 months ago with the onset of problems 10 years ago. One of her symptoms is fatigue and some days she can sleep 18 hours.

She has good days and bad days but all we can do like you is get on with it.

You will find help on here and also the MSA Trust have specialist nurses who can also help and advise.

Welcome to friendly help.

Paul

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Hi Paul, Thank you for replying, John can also sleep the clock round. I have to be quite strict in trying to get him to get up etc. This time of the year is the worst, its either too cold or wet to get him out. He does have a mobility scooter, but thats not very good this time of year.

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Carol

I hope you have external help to take the strain away from you.

Don't try and do everything you will end up bad yourself.

As I say to others use these words " could you help or advise me please"

It's amazing what happens then..

If you are in the UK MSA trust is a huge help and mind of information to tap into.

I insist that Sue goes out every weekend even if it is Mark's and Sparks!

Take care

Paul

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Hi Paul, Thank you for your concern. I do have a few really good friends who help to take the strain. I manage a pilates class once a week which helps me keep fit and relax. I have always been very independent but that has to change!! All the best

Carol

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Hi Carol

My brother suffers from fatigue really badly. If I take him out it can take him a couple of days to recover afterwards or even if he has just been up in his chair for more than a couple of hours it makes him like this it is good that you have found the trust as they are all fantastic and a mind full of information and help

Corinne

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Hi Corinne, sorry that your brother is also suffering from fatigue, it's difficult to understand how someone can feel so tired all the time, but John is exactly the same. I think he is only just recovering from Christmas. Had my family to stay for a couple of days, he had to keep having a lie down (i'm not sure they fully understand)!! Thanks for making contact.

Carol

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It is hard for everyone to understand. My brother is in a nursing home so I guess we don’t even get the full idea. I do however spend a lot of tome with him and speak to him every day and can see that way how tired he gets. Good to be in touch with people who experience the same things- it can make a difference xx

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Thank you for your reply, all the best to your brother.

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Hello Carol

I can only repeat what others have said in welcome to this community albeit we all wish we had no need of it.

Jackie, my wife, has been coping with fatigue from an early stage. She was incredibly active before diagnosis and has had to come to terms with a complete change of lifestyle.

Our whole routine is now geared around getting Jax the rest she needs. We have thrown the traditional notion of “its not good to stay in bed” out of the window!

We have found that periods of rest throughout the day has helped us still do something active most days. Jackie wakes about 9:00, has tea in bed and will stay there until mid morning. Any activity we plan between 11 and 3pm usually. At 3 Jax has a ‘rest’ for a couple of hours and wakes refreshed. We usually do little in the evenings albeit probably twice a week we will go out but have to catch up on ‘rest time’.

One thing you may wish to try is the drug Amantadine. Jax takes it for fatigue and we think it helps a little. It was suggested by her neurologist. Unlike some drugs you can try this one and come off it without issue and for that matter go back on it again if needed.

Finally, you have had good advice about taking a leaflet about MSA around with you. Few health professionals have ever heard of it and so we always start the conversation “Jackie has Multiple Systems Atrophy which I am sure you haven’t heard of as most health professionals haven’t because it’s so rare”. This often breaks the ice and they are happy to admit they too do not know of it. As someone else has already mentioned, you will quickly become more knowledgeable than most on MSA and you need the confidence to push for the support you need. We’re also here to help if need be.

Take care, Ian

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Hello Ian

Thank you for mentioning Amantadine, we have a visit to the neurologist on Friday, I will ask about it. Does Jackie have very low blood pressure as well? I have always assumed the fatigue was caused by this. John's is very low he is taking floudrocorticone at the moment, but it is not really helping. Just talking to friends for any length of time completely exhausts him.

All the best to you both, Carol

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Hello Carol

Jackie doesn’t have low blood pressure, thankfully. I’m sure you will have noticed if you have read the various posts on this site, everyone’s journey is slightly different- much in common but also no-one quite the same as others.

Just as I was writing this I have seen the post from Sam about Q10. We hadn’t heard of that and may well try as well as Amantadine - our doctor is very good and is as interested as us in trying anything to help symptoms - is now on the list for the next visit!!

Good luck, let us know how you get on.

Take care, Ian

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Hello Ian

Sorry I have taken a while to reply. I mentioned Amantadine to the neurologist, he said it would be OK to try it. Like you I have just read Sam's mention of Q10. We will have to make a visit to the GP, see what she thinks. Hope you are both as well as can be.

Kind regards, Carol

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As others have said, fatigue is a big problem in MSA. Good advice is to try to break up activities for the day in small sections, try not to do everything all at once. If you are planning a day out, make sure it is followed by a rest day. Lots of people find Co-enzymeQ10 helpful for fatigue. There is no evidence-based research to say it works, but the majority of people with MSA that have tried it found it helpful. You would need to start on 100mg three times a day, for a month, to see if it is beneficial. it is quite expensive though and not available on prescription. Discuss with your GP first please to make sure it isn't contraindicated with your prescribed medication.

Kind regards, Samantha, MSAT Nurse.

N.b. People from outside the UK can contact us by email for advice.

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Hello Sam

Thank you for the advice regarding Q10, I will be talking to John's GP about it.

Kind regards

Carol

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Hello 1246 Carol,

I am new to health unlocked. I'm in another form for my own personal autoimmune disorder PMR however my mother was diagnosed with MSA ultimately two years after a misdiagnosis originally of Parkinson's. We live in the u.s. Virginia. July started the beginning of the fourth year of her symptoms. I have done a tremendous amount of research. I feel like she is progressing very rapidly. She is unusual and that she is about 20 years past the average onset she is 74. On the other hand I am about 15 to 20 years younger than the average onset for my PMR. Environmental and toxins are both contributing factors for both diseases. Coincidentally she took prednisone 4 times a year at her discretion to manage her Fibromyalgia something that four of us in my family have. I'm very interested in learning all I can about the MSA. As far as the fatigue, it is a huge issue for my mom I wonder if it is attributed to the hypotension and also just because? Take good care and I hope your husband has more better days than not. I make a point of talking to my mom every single day.

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Hi

It seems your mom and my husband have both developed MSA later in life, I suppose that is better than developing it earlier. Fatigue and low blood pressure are the biggest problem at the moment. Your mom is lucky to have you, as you are obviously very understanding and caring, which goes a long way. All the best

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Thank you Carol.💚💜💙💛

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Yes my husband also developed symptoms when he was 70. However, I am convinced he had a couple of episodes when he was much younger, one when he was doing his National Serbvice. The circumstances were unusual in both cases. It is easy to job backwards and say this but it was before I knew him. Later after diagnosis fifty years later I read what he had written about it at the time and there it was ......

FredaE

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Hi. My mum too had Parkinson’s diagnosis at 71. Then 3 yrs later Msa. She didn’t suffer hypotension until latter stages. The day after any exertion she would feel it. All the best to you. Dad and I cared for Mum at home until the end. It’s a tough road xx

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Thank you Alison and I'm very sorry for your loss. May I ask how long your mom has symptoms until she passed? I'm reading about the five to nine year average life expectancy. My mom is entering the fourth year things seem to be progressing very quickly. Take good care.

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Hello Janet. My mum was still working at 70 and walking 6 miles easily a day. She had a very sudden change and was treated for Parkinson’s for 3 yrs. her decline was too fast fir thus though despite all her medication. Re diagnosed and lasted a further 2 yrs. she was virtually wheelchair bound at about 4 yr stage. The blood pressure issues had started then. Luckily she was spared swallowing and breathing issues until the very end. She was being treated , admittedly wrongly, with a pressure sore the last six months on top of not being strong enough after her flu jab. These both added to her speedy demise.

With hindsight we can recall bowel issues and for a longer duration a bad balance problem. Initially treated for ear infection but Mum never complained much so put up with it.

The time scale is pretty accurate generally but it is all dependant on what gets thrown into the mix along the way. I had someone at my support group still walking with just a stick after 14 yrs. always exceptions to the rule.

Good luck and take care of yourself. X

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Aliso,

Thank you so much for taking the time to respond and sharing. My mother to was misdiagnosed treated for Parkinson's for 2 years when they realized with the various medicines there was probably something else wrong. She is nowhere near in the same physical fitness of your mom. Though my parents have spent the last 20 years traveling the world has so many friends started dying around the age of 50. Their last big trip they were standing on a glacier and Antarctica. The onset was quick started with psychiatric issues at age 70 never previously experienced. The balance the gate she has severe problems with hypo tension and then the severe swing of hyper non controlled by meds of course. Her cognitive ability is noticeably affected. Unfortunately she is in a situation with severe pain needing to knee Replacements hips and a second back surgery. Her knee replacement was halted having found the need for a second back surgery schedule January 24th. She is barely able to walk at all and it is excruciating. My fear is that as I have read between year four and five most find themselves wheelchair-bound that this may be the outcome as she failed the PT program for Rehab following. This week we had to remove the bed and put the mattress and box spring on the floor and then she took a major spill in the bathroom the other night on that knee and hit her head. It just seems like it's one thing after the other. I really fear the breathing and swallowing talking. We are the same we would not want to go through that so I know that that would be put to an end by her. Again thank you so much. ❤💔❤💔

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You may want to consider a profile bed. Available through OT. They are a big help due to raising and lowering. We had ceiling hoists given too. Essential in the last year. Mum stayed at home with Dad and I went down 4 times a day for the care. She was bedbound basically though with a lot of time patience and thinking we managed to shower her every day until the last week. It was at that point I refused as she was in so much pain doing it. She couldn’t even bear us holding her hand when she died.

A x

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💔💐🌺🌸🌸🌸 Thank you for the suggestions.

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But to add she was still mentally capable right to the end. X

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One thing which makes a bit of a nonsense of the statistics is the phrase life expectancy AFTER DIAGNOSIS, We all know that MSA is hellishly difficult to diagnose and often presents as Parkinsons. or one of its nasty relations. As new symptoms appear, in whatever order they choose, the diagnosis may be changed more than once. Survival rates do seem to have immproved with better awareness and treatment of some of the symptoms. When I first started trawling the internet twleve years ago the current figure was two to eight years but now it is quoted as longer.

Keep active and use your muscles as long as you can,, Its not the muscles which are wrong but the nerves controlling them. do your physio, eat well without neing silly, make sure you get early treatment for any chest or urine infections. Be aware of the problems about relying on temperature to decide when to discontinue antibiotics, and above all take the prevention of falls seriously. children and rugby players bounce. older people don.t. They get spells in bed in hospital with broken bones which can be the beginning of the end.

Now you have read all that cheerful stuff, remember that the birds still sing, the flowers still bloom,friends and family are still ther... there is still a lot of joy in life even if it comes in smaller portions and that is the best medicine of all

FredaE

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Hi Freda

I like your reasoning. I try to keep John doing all of the things you mentioned, I am sure exercise and diet do help.

Carol

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Sorry for your loss. Kind regards Caro

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Welcome 1246carol 💜

I am sorry you have found your way here. I too am new I am here in support of my mother who was diagnosed and this is beginning her fourth year of MSA though originally missed diagnosed with Parkinson's for several years. These are great and helpful groups here.

Janet

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