Hello, I have decided to join this group in order to try and solve questions we were never able to get answers to while my husband was alive. I lost him in October 2019 after an initial diagnosis of Parkinson’s about five years previously.
Have any members suffered breathing problems, and by that I mean involuntary breath holding? His ‘helpful’ Neurologist, on seeing a video of him, just said ‘ That’s not Parkinson’s’, but offered no further help. We researched it endlessly, because believe me it overtook his life like no other symptoms. Only a few months before he died (after suffering a fall) we sought a second opinion.
This Neurologist was the first health professional to even mention MSA, and thought the breathing problem was something called Central Brainstem Apnoea. Has anyone been diagnosed with it? Such was the lack of knowledge in the local Hospital where he spent his last few weeks, that one night they paged the oncall doctor as they had no idea what was happening to him. The lack of knowledge and unwillingness by doctors to try and get answers has plagued my family, and I would love to know if any kind of treatment or research has been carried out.
Thank you
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Maiyasnan
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Short answer; Yes . But I think your husbands was more extreme than many people. For years my husband had been having sudden hugh sighs. Not a problem in themselves but it would make people ask him if there was something the matter. I am afraid that with a rare disease where your GP may never see a case in a lifetime's practice this sort of ignorance is common. No one's fault just a rarity. because it caused him no real problems and there were other symptoms which diid i did not find out about it - in fact your naming it as central brainstem apnoea is new to me. I hope you have sucess in finding more about it. I am sorry it caused him so much trouble but I don't think it would have helped him much to know sooner as I don't think there is much that could have been done
Thank you Freda for your prompt reply and useful information.
Yes, my husband did start with heavy sighing (we even had to leave a theatre once as people were tutting and turning round even though he was in a wheelchair in a designated disabled space!) This was extreme, it would take me three hours or more to feed him his evening meal, I had to time the mouthfuls according to the pattern of his breathing as the threat of choking was terrifying.
I absolutely understand the comments about GP’s, rarity etc, but what I found most frustrating was the lack of knowledge at Specialist level (and I believe this has been touched on by the people who run this website). The late diagnosis of MSA came from the second opinion we sought outside the NHS, but the Neurologist did still work within the NHS. He arranged sleep apnoea tests, and this was a factor in the Central Brainstem diagnosis.
I agree that nothing would have changed in my husband’s treatment, but how I wish that this distressing symptom could be at least acknowledged and included in further research.
At consultant level there are some arrogant dinosaurs still left hanging about. I'm afraid. Lesson one is how to bypass their more foolish ideas by being better informed than they are and getting yourself recognised as a useful pleasant part of his medical team right from the start of any hospital visit. and knowing when, and when not, to create hell over anything as a VERY last resort. Once had a stroke specialist try to re-diagnose as Lewy bodies dementia on the basis of a short bedside chat with no-one else present(!). I arrived on my daily visit to help feed him to find new medication already in place. I phoned his MSAT nurse specialist and she said it would do neither good or harm. That was a time to object politely on the grounds that his medication was carefully prescribed and timed by his movement specialist consultant but not to raise hell. and the medicine was quietly withdrawn. I suspect by the ward doctor. who had decided I was ok and knew what I was doing. If he had insisted and the meds been harmful then that is time to be tough but you can only do it once without being labelled as difficult and then no-one takes any notice of you
I agree with your comments re beating the Specialists at their own game! My son, your average computer obsessed geek, spent endless hours researching this ‘elusive’ symptom. Every time he typed ‘breath holding’ in the search engine, it only came up with babies and toddlers!Finally he actually stumbled across research, but it was a paper written by Neurologists in India for a medical magazine, and was several years old. Just to see it acknowledged though was a relief, but it was highly technical language as you can imagine. However, nothing ventured, nothing gained we thought, so we printed it off and I rang the Neurologist’s Secretary to ask if I might be allowed to see him to discuss it.
I got no further than ‘I found it on the Internet’ and she shot me down in flames pretty quickly. No, he would not respond to things found on the Internet she said, so I made an appointment with the GP to ask where I might go from there. The GP listened, admitted she knew nothing, but did say she would read the research.
If I tell you that the Surgery managed to lose THREE copies of that paper, you can tell the sheer frustration we felt. The conclusion we drew from all this is that, in our NHS Trust at least, no one is interested in trying to find answers for desperate patients and their families.
I used to start off with a broad conspiratorial grin. "i have consulted doctor google perhaps you would like to explain his suggestions".connsultants can have such tiny egos. After all their stock in trade is information and they are being undercut!
Hi, my wife Sue has been living with M SA for near 12 years but it was not mentioned until year 8.One of her symptoms is sleep breathing irregularity where she may breathe 3 times in a minute. It has caused concerns over the years and a positive pressure mask has always been spoken about, but as her sats are within preset tolerances we are ok.
It can be distressing and last year she had respiratory failure which was diagnosed as laryngospasm...
Like all of us I have to educate professionals when I meet them, but have always found them helpful and attentive. I usually start with, hi doctor could I give you some background history, have you heard of multiple system atrophy? Well it's a form of Parkinson.....
Everyone's symptoms are different in type and severity and are always changing.
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please stay on the group as your experiences will be helpful to others.
Hello Paul, thank you for your reply and information regarding your wife Sue. I am truly sorry to hear about her condition.
In my husband’s case we only got the diagnosis a few months before he died, after going ‘private’ in sheer desperation. There is a problem with doing this in terms of getting everyone on the same ‘hymsheet’, which I realise now was something we should have addressed.
We only had a collection of letters from the consultant which we handed into the hospital and they were put in his notes, but it became apparent from subsequent conversations with the ‘duty’ consultant of the day that they weren’t aware or had dismissed.
Incidentally, he was referred for a CPAP, but I was told that unless he was capable of pulling it off quickly if he felt sick, it wasn’t safe- and he couldn’t.
Sadly, in hospital, his more physical problems overtook the neurological side, Diabetes, UTI’s, and falls, which ultimately caused his death.
His death was referred to the Coroner, and before the Inquest I submitted a ‘timeline’ of events from the families perspective ( we were living in the hospital during his final weeks) We suggested that a ‘Passport’, similar to that used for Dementia sufferers, would be of enormous help for patients with neurological illnesses like Parkinson’s, etc. To my surprise, my statement was read out in the Court, and the Coroner asked the Matron ( a witness) to look into it with a view to introducing it into the Trust’s care plan.
We were invited to meet with the Matron to discuss this, and I thought what a great opportunity to broach the whole subject. The Inquest was held February 2019, our meeting set for the end of March 2019- and we all know what happened then.
I chose the MSA Trust for donations following his death, and will continue to support it. One last thing, I was heartened to discover that a large garden centre near us has MSA collection boxes at all it’s tills.
We were very lucky with Alan's quick diagnosis, initially assessed with cerebellum ataxia he was referred to Mr Michael Parkinson (I am not making this up, promise) a consultant at the Parkinson clinic at Queens in London. He referred him to another consultant who diagnosed MSA - type C. At one of the meetings with her I mentioned the acting out dreams, heavy sighing and concerns that at times he appeared to stop breathing. He was referred to the sleep clinic where he was diagnosed with sleep apnea and given a C-pap machine to use at night. As I mentioned earlier the specialists we have seen have all be very knowledgeable regarding MSA. December 2019 he was in A&E after being admitted with pnuemonia we actually had a doctor come to see Alan who for a change knew more about MSA than we did. It was quite refreshing but also sad because it was him who told us that if he did not respond to antibiotics within 48 hours there was nothing more the hospital could do. Not what you want to hear but you should be aware of. When Alan was admitted on Christmas Day last year he was not allowed to use the c-pap because of the ward he was on, they told me he needed to be on the respiratory ward but there were no beds available. With regard to support from his doctors and care team we have been very lucky that our local hospital had the knowledge and expertise to treat him. I could not praise them enough and feel confident that he got the right care in his last few days.
Thank you for sharing your experiences. You were indeed fortunate (if that is the right word) that the doctors who looked after your husband were so knowledgeable regarding MSA. We literally hit a brick wall in NHS terms when my husband’s Neurologist just looked at the video we made, and said that it wasn’t Parkinson’s. Fine, but why did he not then offer to at least run it past his colleagues, or refer him on to someone else who might have been able to help?
I was so stunned that it never occurred to me to challenge him.
My husband only got an appointment every eight months, we found that the Parkinson’s Nurse was of little help. She once said that my husband wasn’t ‘your typical Parkinson’s sufferer’- she sure got that right!
I have found it quite depressing to read so many posts from partners, carer’s etc, that highlight the struggles they have had in order to get a diagnosis, or even an acknowledgement of the illness itself.
My partner, diagnosed with MSA last year after many years thought to have Parkinson’s, has acute breathing problems at times when sleeping on his back. He remains unaware and apparently fast asleep but is assumed to be shortage of oxygen arising from inexorable atrophy of all brain functions. At the moment it’s not a major problem but will probably become worse.
Have you been referred to the sleep clinic? Al was seen very regular and the last few months they phoned him every two weeks. Through the C-Pap they got readings their end on how often he stopped breathing when he was a sleep, they knew if I hadn't cleaned the face mask properly and when he removed it, which he sometimes did.
He was tested 2 years ago when he lived near Inverness. The decision was that further input was not needed. Perhaps a further test will be offered now but at present it doesn’t happen for long periods and may be caused by the tongue dropping to cover the windpipe. Turning him at night is being tried. Not an easy job for me.
Thank you for your reply. My husband’s problem wasn’t related to sleep- in fact his breath holding stopped when he slept. He held his breath throughout the day, often ending it with a loud explosive sigh. Mealtimes were a nightmare, it was not unusual to spend three hours trying to feed him his evening meal.I don’t know if you read my initial post, but he passed away in October 2019 but not from MSA.
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