Brother just beef diagnosed

[Clairebeth75]

Hi my brother has just been diagnosed with MSA.Have so many questions,feel overwhelmed & sad.My brother is only 53,why had I never heard of this illness before!

[Marie_14]

Claire so sorry your brother has been diagnosed with MSA. He is a young man too. It is such a cruel condition. People on the site are very helpful if you need help. Wish I didn't have to say welcome but there is help out there. It would be wrong to give you false hope however. This like all neurological conditions is very hard to bear. You didn't hear about it because it's rare and again like other neurological conditions doesn't get the publicity.

Marie

[Clairebeth75 in reply to Marie_14]

Thank you all for your support & kindness.It's actually nice to speak to people who understand what you're going through.

I have joined the MSA trust & spoken with them,they have been great & given me advice & info that otherwise I wouldn't have known.

It has all been such a huge shock & to be honest my whole family are still processing the diagnosis.My poor brother.........

Early days I know,thank you again for al your lovely,supportive replies x

[Alisonleicssupport]

It is rare and little heard of. I work to improve that recently made it to BBC tv.

I also run the east Mids support group. Look up the MSA trust and see if there is one nr you. Worth going to as specialist nurses attend who have the knowledge to answer your questions. Register with them and get information for yourselves and your gp. They will also need it. Happy to help with specific questions where I can. I cared for my mum with the condition.

Don't feel alone. We are all here to help. Xx

Alison.

[Clairebeth75 in reply to Alisonleicssupport]

Hi sounds like you are doing really good work,well done.Raising awareness for this terrible condition is so important.

Your Mum was really lucky to have you caring for her.

[Leanneforbes51]

Hi I was my husband carer he died in December he was 45 years old if you have any questions you think I might be able to help with or would just like to have a good rant about it I am always here big hug Leanne x

[Clairebeth75 in reply to Leanneforbes51]

Thanks for your kind words.How terrible that you lost your husband so young,45 is no age!

Awful question to ask but how long did he live after being diagnosed?

[Helenjonker]

I'm so sorry your brother has had a diagnosis. I was very much like you, and had never heard of this cruel disease until my wonderful father was diagnosed. It's a very rare unforgiving neurological disease. I'm limited with the support I can offer, but would advise you to make the most of your time together, and to get as much help as you can.

If you need someone to speak to you are welcome to contact me

[Clairebeth75 in reply to Helenjonker]

I'm so sorry you lost your Dad to this cruel disease.You are so right I really must enjoy the time I have with him,will make it my priority.

Thanks again for your kind words

[Beverley52]

Hi, I just want to agree with everything that everyone else has said.join the trust,it'll cost you nothing, and give you lots of info. Get in touch with the trust nurse for your area,again lots of info, whenever you need it. Ours was always back to me within a few hours whenever I emailed her. Carry the information leaflets with you. Most doctors/ hospital staff, have never heard of MSA either. You will know more than them.

And then, spend as much time with him as possible, time with family is very important to the sufferer. And do what you can now. Positivity will help. Though right now you won't be seeing much of it. We here have all been in your situation, some as family, some as sufferers, and some as carers . It's a very unforgiving condition. But we'll support you.

Hugs to you, your brother and your family. Beverley.x

[Clairebeth75 in reply to Beverley52]

Hi,I have joined the trust & have found them really helpful.Sadly no groups in my area.

Thanks for your understanding & kind words

[Glenn2014 in reply to Clairebeth75]

We also have no group so we travel across the Humber bridge to the meeting in East Yorkshire. But it was worth it as we met some nice informed people. Glenn

[Hidden]

I agree with you, we are part of the local parkinsons group and no one there had heard of it, even though there was someone there with psp.

It appears that it was basicly called "parkinsons plus" along with psp, by most doctors until they started to study it properly with modern technology. There is about 1/20,000 that develope it. It also seems to start early in life where the white material of the brain changes protein and loose its abilities to insulate tbe neurological signals causing a lose of the bodies atomnic functions until the mid 50's where on parkinsons type symptoms also set in.

There is no true test yet for the condition (its symtom based) and there is no cure only help with the symtoms. Using the right medications and adapting your life to accommodate the condition is the best way forward.

We now know that my wife started out with low blood pressure in her teens, breathing astma issues, over active bladder and bladder retention problems. Sleep dificultlies and finally constipation. She then had a bang on the head after which the parkinsons type symptoms came out at the age of 57.

The medical profession still have no idea what causes it but they do not think it is genetic.

[Clairebeth75 in reply to Hidden]

Thank you for your reply.My brother also had breathing type problems as a teenager,his lung collapsed at one stage.He developed an over active bladder later in life.A few years ago he was knocked down & suffered internal bleeding on the brain.

From that day he lost his sense of smell & has gone downhill since.His consultant however thinks the knock to his head isn't related to his MSA.

[Teresa5]

Hi if you need to talk I am here teresa 52 years old just I might add

[Clairebeth75 in reply to Teresa5]

Thank you Teresa your kindness is appreciated.Sad to think this rare disease affects so many lives.

[Hidden]

It may seem rediculous but you brothers head injury and consiquence of brain bleeds is a familiar story. I was able to pay for private consultations to find out what was wrong with my wife. She had a bang on the head resulting in a hematoma (bruise) on the brain around where the crown of the head is. This resulted in her suffering full right side paralysis, fits and eventual brain bleeds twice over a year later. These are something that should not have happen from just a bruise on the brain and the consultant could not explain it at that time. I have since been told by a neurologist that she has CAA (Cerebral Amyliod Angiopathy) which is suspected to go hand in hand with MSA.

Kevin

[Marie_14 in reply to Hidden]

Kevin

I have learnt more from your two posts than any doctor! I had no idea a blow to the head could trigger MSA. It might make sense in my husband's case too. When he was 20 and serving with the RAF in Aden he was injured by a hand grenade thrown at him and a group of sailors in front. Anyway he suffered very serious injuries to his legs but it may well be that he hit his head when he fell? I can't ask him as sadly he died on 22nd February. Today would have been his birthday. He would have been 73 today.

He had the over active bladder and constipation and also developed a rare Leukaemia which he was diagnosed with in 2014. The following year he was told he had PSP with signs of MSA. Last year in December 2016 he was told it was MSA. Then another Neurologist confirmed that in January 2017. He died the following month.

This is a very interesting possibility? It would be interesting to know how many people with MSA ever suffered a blow to the head? Many won't remember it unless it was very serious?

I actually read something a long time ago about a possible link to head injury and Dementia. Can't remember where I read it though. Thanks for your very valuable contribution. Will any Neurologist seriously look at this however? We really need someone to take this seriously. It might help stop MSA in future if it were proven?

Marie

[janehey in reply to Marie_14]

I think a link between traumatic brain injury and dementia is being made with soccer players and boxers.

In MSA, that link with a head injury is a bit more tenuous. My husband had autonomic failure BEFORE acquiring a head injury in an RTA. Did it accelerate progression? No way of knowing.

More research needed, I think.

[FredaE in reply to janehey]

Hi jane

Victor was hit by a car and had head injuries after he was diagnosed. It took three years hard work to get compensation and the conclusion was that it could have accelerated his death by about 6 months. But that was the consultants opinion based on symptoms not a connection based on research.

It seems clear that any for any correlation between life events and a rare disease to be valid, the life event itself must also be rare. Traumatic head injury is very common especially among rugby players, footballers,boxers, car drivers; so is dementia so there may be a connection. Traumatic head injury is common, MSA is very rare so if there is a connection in individual cases it it not going to be helpful in finding out the general cause.

FredaE

[Hidden]

Hello Clairebeth,

My father has recently been diagnosed with MSA, he is only 61, we had never heard of this either, but there is plenty of advice on the msa trusts website.

If you every need to let steam off, please message me as it really helps to talk to other people. We are all staying strong for dad and like everyone else on here, just spending as much time as we can with him.

Keep strong and remember we are here for each other xxx

[Beverley52]

Well, all the knock on the head posts have got me thinking. Billy had a head injury at work when he was about 30. I don't know too much about it as we were not together then. I only know that a bolt flew off a machine and struck him on the head, he was off work for some time. Months I believe. Can't ask him either, as he has now been gone almost 4 months. He was diagnosed at the age of 50. His neurologist took only an hour to come to his diagnosis, as he had encountered MSA once before. He managed 10 and a half years from then. Which we thought was pretty good.

He would have been 61 on the day you lost your husband Claire.

Billy donated his brain to research, and I should be receiving a full neuropathology report in the next few weeks. I'm not telling anyone what to do, but please consider donation. It's the only way of moving forward in MSA research. No good, I know, for our loved ones, but could help many people in the future.

Hugs to you all, especially those of you still trying to get your heads around this awful diagnosis.xxx

[Marie_14 in reply to Beverley52]

Beverley it very much depends on the hospital and doctor. When I was told they were removing all medication including fluid I asked could we donate my husband's brain. The answer I got was: "oh you want to donate his brain to pathology"! I said no I didn't mean that. Then I was told that people did donate oirgans to others!!! I said again I didn't mean that either! So he then said:" oh do you mean research"? I said I did. He told me he would get information for me but I never heard anything. Then 2 days before my husband died the Neurologist appeared and I told him I had asked about donating my husband's brain for research but heard nothing. He seemed keen but he never came back to me and so it never happened. I wonder how many times does that happen in hospitals? I didn't realise I should have organised it before he was near death. Nobody tells you these things.

Marie

[Beverley52 in reply to Marie_14]

What a sad state of affairs. You'd think they'd be falling over themselves to get the paperwork done when donations are offered. Our neurologist was brilliant and organised everything when we said we wanted to donate, he even took the time to go through everything on the paperwork to ensure we understood it all. We did this 18 months before Billy died, although at the time we thought he had a very short time, as he was in hospital and not expected to pull through, so it can be done at short notice. He asked us if he could have a copy of the report as well, when it's ready. . And asked me to contact him when I get mine, so that he can go through it with me.

It's so important. Not just for the confirmation of diagnosis, but hopefully for the future. I'd like to think that Billy will help someone, somewhere along the way,. That's what he wanted.

I miss him. He was a lovely, caring, funny man. True gentleman.

[FredaE]

Dr Anne Silk is correlating the life experiences of people with MSA to see if there are significant events like head injuries . She will be giving a paper at london event in May 18th. She is finding what seem at first sight to be significant correlations

Clairebeth. Life expectancy is not an awful question at all. I am afraid the answer is not helpful.

You will have seen from these posts how many people are diagnosed with all sorts of related diseases before getting a diagnosis of MSA not long before they die. There are other people who had a comparatively early diagnosis who have lived for eight or nine years or longer

So the information we were given way back was that life expectancy was between 6 months to eight years AFTER Diagnosis was both true and untrue and useless unless you know you have been diagnosed early.

In any case, each person is different and MSA progresses at different rates, some a smooth rate and some in a series of steps. and some a mixture of the two

Of course you want to know how long you have together but no one can tell you. It is best to make the most of what you can do now and never put off doing anything impportant to you. Do it now -

Freda

[tingates in reply to FredaE]

Professor James Rowe at Cambridge is also supervising a study. I seem to remember a few questions about head injuries on the questionnaire. My husband had a very nasty bang on the head in cycling accident in his early thirties. He has had a number of 'funny turns' and some strange behaviours since then. He has a 'working diagnosis' of MSA, but no BP or urine issues, so we really have no idea what the future holds. However, the head injury issue does seem perhaps you be a bit more than conventional incidence.

[Yanno]

Hello Claire. You can make a difference you know by being positive, by doing as much as you can, when you can. Never put off to tomorrow what you can do today. The past is about happy memories not regrets and the future is a difficult journey that you would never have chosen to make, but one where you can still find happiness and enjoyment together. Take care, Ian

[Crodiet]

Hi,

My sister was diagnosed almost 17 years ago by Professor Quinn at the National Hospital in Queens square London.

The prognosis he gave was any thing between 4 and 20 years, we're going for the record.

They do have a brain bank you can donate to, both healthy and sufferers are encouraged as far as I know as this gives them things they can contrast.

Unfortunately Prof. Quinn has retired and the focus of research has changed slightly. I believe there is some research going on at Kings.

Good luck with everything. They are right when they advise take it one day and one thing at a time, it's very easy to become overwhelmed.

Take any help offered but our experience is be careful of medical interventions "just" to help with living like a catheter, as they can lead to infection which seem to contribute to early death.

Good luck, best wishes.

Pippa

[Glenn2014]

Don't beat your self up about not knowing about msa we didn't know ether. If you want to ask questions I do my best to answer them out of my own experience so. You can also visit the msa trust web site it has a lot of useful info on it. What I would say is if the voice is still fine then look into voice banking . Talk to you doctor about it he can refer you. Do it strait away as I waited far to long and my voice has deteriorated to a point were it wasn't possible to do it. Now I talk through an iPad and a voice on predictable which isn't mine. Good luck glenn in Lincolnshire.

[tingates in reply to Glenn2014]

John my husband can now barely speak. We gave never had any serious concern or assistance with his speech. Certain nothing like synthesised speech. John has no dexterity with his hands and very limited eye movement. Does anyone have any idea of anything that might help with speech as it is one of the most difficult to live with.

[Diane831 in reply to tingates]

Hi, Why don't you start a new post with this topic as this is well buried in this other one.

We have had a visit from communication team for our area. We are in Greater manchester and the Team - ACE - are a charity that do the communication stuff for the NHS. Our Speech therapist referred us. We didn't do the voice banking and Geoff has worked hard to keep his speech but it is beginning to be a problem. They are going to supply him with a tablet and it will be controlled by a small switch which he can hold in his hand. It should be able to speak for him and will be set up by them to help him as much as possible. there were 3 people here for the assessment and they were here for 2 hours trying to understand Geoff's needs and what he was able to do. We aren't as far along the road as you are, but communication is so vital to life.

Diane

[tingates in reply to Diane831]

Diane, hello. Many thanks for your reply. Starting a new post is a good idea, I will do that. Sounds like you are getting some good help. I hope you can maintain your communication as it is a vital element in the ever diminishing quality of life equation.