Diagnostics

[CanAmK]

My husband’s neurologist has stated he possibly has MSA-C. He has been through a tonne of tearing but she has only ruled out other neurological issues. Such as ALS, Cancer, Parkinson’s, MS etc. I would love for it not to be MSA; but, if it is I would rather know. What testing ultimately allowed for diagnosis for you all?

[FredaE]

there is never a definite diagnosis for MSA...Sadly it is a builld up of probabilities increasing as you get new symptoms until you reach the verdict MSA probable. ..which is the best you can get

Some people are switched from one dx to anotherseveral times

The consolation is that unlike cancer for instance you are not missing vital treatmentn by having to wait to find out but the downside is that it is awful not to know and coming to terms with that is hard.

Treatment is to make your patients life as comfortable as possible and whatever you want to do - do it NOW while you still can.

Be aware - there is no magic cure - only a few very effective ways of transferring money into the pockets of the unscrupulous from those in vain search of a miracle. Don't be taken in by them. There are very good patients support groups like this one with well informed members both patients and medics. If there was a simple cure for this nasty disease, everyone would be using it

We wish you luck

[CanAmK in reply to FredaE]

Thank you for the reply. Yes. My mother-in-law is looking for the one pill that fixes everything. Unfortunately based on symptoms it looks like this is what we are dealing with. It was a great reminder to “do now” as he is beginning to become more self isolated avoiding the community.

[Yanno]

Good morning, or probably good night for you in the USA.

MSA is truly a beast of a condition and so we understand your sentiments completely. Unfortunately it appears there's no one diagnosis for MSA, it's more a matter of ruling out other conditions and looking for other pieces of a complex jigsaw. For Jackie it was the various symptoms and a tell-tale 'hot cross bun' pattern when she had a brain scan.

The MSA Trust here in the UK have an excellent web site where you will find information about symptoms.

There's also a useful comparison between MSA vs PSP vs CBD on the CurePSP web site available on this link bityl.co/3NS6

Good luck, and I hope you get some peace of mind if nothing else.

Take care, Ian

[CanAmK in reply to Yanno]

Thanks for the reply. He has had soft signs like a partial hot cross bun, borderline low dopamine production, cerebellar atrophy in addition to ruling out parameters. He is advancing quickly and this one site seems very supportive whereas I live rurally and have never heard of anyone in this area having MSA.

[FredaE in reply to CanAmK]

This is one of the problems My husband was diagnosed over 8 years and I did not meet anyone who knew anyone suffering from MSA outside a medical context until I met a woman a year after he died whose husband had it . She had never met anyone either.It is very rare. . and people often mistake is for other "M" diseases which are nothing like it. We tend to use the full name of Multiple System Atrophy anywhere outside the forum so that this confusion does not happen as it can be very difficult explaining that no, it is not MS, not MD, not Motor Neurone especially as most people are not too sure about them either.

[Yanno in reply to CanAmK]

As Freda has said, MSA is very rare and even medical staff frequently haven't heard of it. We usually preface any conversation with a medical professional with "I'm sure you haven't heard of MSA, most medical people haven't....". They then often agree that they don't know about the condition. One of the great things about this community on HealthUnlocked is that everyone here has been touched in someway by MSA and so we all have so much in common.

Take care, Ian

[Derkie54]

Hello CanAmK,

It's a very good question, how can you be sure.

In my wife's case it must go back 30 years when things started.

She was diagnosed with possible MS, then PD and about three years ago MSA-P

As the others say there doesn't seem to be a definitive test that confirms MSA.

It's based more on the experience of a neurologist and supported with various tests.

Balance was a big issue for us and my wife had table tilt tests which did support the MSA diagnosis.

The rate of progression and the number of symptoms varies from person to person.

In my wifes case luckily she goes for some time between changes, although the latest last November was a big one and she can no longer walk, but since then no more changes.

Like you, we thought is it MSA could it be something else. We joined this forum, people were describing their own issues and quite often I thought yes we have that, we do that or whatever.

These days we accept it and just get on with it, if we must have a label then I think MSA seems to be the best fit.

This forum is very informative and it's nice to know there are people around happy to support each other.

Keep smiling if you can and enjoy as much as you can.

Derek

[CanAmK in reply to Derkie54]

Thank you all for your interest. Indeed a label is just that but it impacts how much government assistance and how fast he can get it as well would be the only advantage.

[Hellebelle]

Hi, I have read all the replies and don't feel I can add very much more. It is very much down to symptoms for diagnosis although my dad was tried on Parkinsons meds and when there was no improvement, MSA was given as a possible cause. He then had a very detailed scan (I think called a DAT scan) which showed up characteristic changes in his brain. The thing that was really worrying was dad's loss of balance which resulted in many falls and broken bones. We tried to make life safer for him but he also had lack on insight into his difficulties which meant he refused any walking aid or support from us for quite some time.

I hope you get some answers and also receive the support you will need to manage this condition.

[CanAmK]

Not only lack of insight but fierce independence leads to falls here but so far no real injuries. I appreciate the feedback.

[Paul_and_Sue_Wood]

Hi, we are both glad and sad you've found us and we hope you can gain insight and help for both of you through this forum. You will find we are quite active because we are all living with this deadly condition.

Diagnosis is done by elimination over a long time here in the UK with some scans giving a more diffinitive answer but as I was told once the only real way is with a brain biopsy.....

We all have different symptoms at different times and levels over the years but ultimately the loss of most functions is what occurs.

All we can do is alleviate the symptoms of the condition with a variety of drugs and provide physical and mental support for both the sufferer and family.

If you still have some mobility get out and enjoy every moment you can as the ability to get out will get harder.

Plan for the worst and enjoy the best.

Paul & Sue

[TK-67]

I am so sorry you are here. As others have said there isn't really one test. In respect to falls has blood pressure medication been considered? With my mum, she falls because of both low BP and mobility issues. It's a rollercoaster and often a bit of experimentation on what works and what doesn't. As it is rare it's vital to find specialists who have experience of dealing with it and also people like a neuro specialist nurse who can help to co-ordinate the other help you will need. Don't be afraid to shout what what you need - as it's rare , it doesn't have a pathway so you have to push things yourself.

[CanAmK in reply to TK-67]

Again, thanks to all of you for your concern. So far, I think his BP is OK. It seems to be coordination and awareness of body in space that is impacting him so much. After hearing from all of you, I am actually beginning to think we were blessed to have found a neurologist so early in his medical care comparatively. His symptoms presented many years ago but he only agreed to care in 2019 and then the issue was to find a neurologist. Her first impression was MSA-C. So, not the diagnosis I was hoping for, but appreciative that she is recognizing the symptoms. I will feel more confident asking for what he/we need.

[heysunshine]

Hi CanAmk,

I am so sorry you have joined this forum... There is not a lot to add re: diagnosis except to share experiences. It seems that we are often swimming in a dark pool with no ability to find direction and just groping our way through.

My husband was "officially" diagnosed 3 years ago after a diagnosis of Ataxia in 2016 due to his loss of balance and wandering gait. We live in Ontario, Canada & went to Boston to be fitted for a special weighted vest to assist his walking - which didn't help and he ended up not wearing for any length of time. He was also furniture surfing & trying to maintain his independence as he had just retired at 61 and had quite a plan for his retirement years as he was an active diver and just purchased his Harley Davidson (dream) which he could never even ride due to the disease.

As many have stated... do all that you want to and can do NOW! Don't wait. Within the last 4 years he has gone from using a cane to full time in a wheelchair and unable to stand to pivot without assistance. What's most frustrating is his inability to communicate as he can barely be understood when he tries to speak. Also the total dependence on others, as he cannot feed, toilet or move in any capacity. It is a horrible disease and watching your loved one decline is painful.

No "magic" pill, just make life as comfortable as possible for him and get as much help as you can.

This forum is superb! The people and information are top notch and will be a great resource for you! I think the U.K. is far more advanced and provides better healthcare resources than we have here in Canada with MSA educated nurse practitioners.

I also follow the MSA Coalition Global forum which was initiated in the U.S. it think.

Be the advocate your husband needs and try to anticipate his next stages. Sometimes you have to "lead" him to the outcome that is preferred to keep him safe and comfortable.

Good Luck!

[Poss]

First,let me say how sorry i am to hear of your husband's provisional diagnosis.

I am an MSA-C sufferer as well and had to travel to the MAYO Clinic in the US for a sweat test done to confirm the diagnosis. The sweat test establishes an autonomic dysfunction which is a feature of MSA. If the specialists are able to conduct a sweat test in the UK, do so as it would be cheaper having it done in the UK than travelling to the US. The MSA symptoms would have started some years previously which you may have or your husband may have noticed.

Physical therapy would help your husband re-learn how to avoid falls and maintain his balance when using the stairs.

Voice/speech therapy is useful to preserve speech & breath-control.

Avoid the temptation of using the wheelchair as that would cause muscle atrophy very quickly.

Presently, I am approaching the MAYO in Minnesota for stemcell treatment which had some success for one patient in the past 2 years. Will let you know more about this when I next go to the MAYO in Jan2021.

Peter

[CanAmK]

I had asked the doctor about other tests and she has not mentioned the sweat test. I am actually in Virginia so going to Mayo is not a problem at all. I think my husband feels he does not need to attend therapy because I am an OT; but, it is different going for a concentrated session versus doing it in the evening when he is fatigued when I get home. He also seems to have a heightened trust in my ability to keep him safe with mobility versus trusting a device. When my PT friend assessed him, he actually was unsafe with any device other than a wheelchair due to gaze stabilization issues; but , we are not using a wheelchair currently. His walking is much more guarded so we were thinking maybe an UpWalker would be good but he is not keen on that. I am not sure he would go for stem cell treatment. May I ask what propelled the sweat test? He does have some autonomic symptoms such as night terrors, apnea, bladder function, etc but so far BP seems good but his ankles have recently turned cold. Does this make sense to you? Thanks for your support.

Krista

[IvyRose64]

My husband was original assessed for MS as his mother and aunt both had that but the tests were negative and for a few years his diagnosis was Cerebellum Ataxia, about four years a go this changed to possible MSA type C. We always use its full name too as several times doctors have written MS and on another they actually put Parkinsons, so I'm very specific that it's Multiple System Atrophy.

[CanAmK]

I find it fascinating how different each one’s experience is. My husband’s neurologists were very clear from the outset that it was not MS, not Parkinson’s, not ALS etc. Good idea to not use the acronym even with medical staff. They are using cerebellar ataxia and gait disturbance currently with suspicion of MSA-C.

[Alovmar]

My husband was told he had Parkinson's but after 7 years of the medication not working they decided it was msa. He never responded to any of the meds they put him on.

[CanAmK in reply to Alovmar]

I’m so sorry for that. I’m afraid that is how it’s going to go for us as well.