Good evening everybody, I’m writing this from my bedside in a ward at one of Birmingham’s finest NHS hospitals recovering from a Tracheostomy operation. My journey started last Thursday in an ambulance with two fine medical technicians, one just starting his 2nd year the other with 17 years service. Neither had heard about MSA and had never met with a sufferer. Which didn’t really surprise me as I had a similar journey a month & half ago with two other medical technicians both of which were unaware of MSA. To be fair to all they listened intently to my preachings and seemed to appreciate the information I gave them along with the fine MSA-TRUST pack which really is full of good information. At the hospital which was quite quiet i quickly pass through triage and taken to the respiratory & gastroenterology department. Here I was met with a range of people ranging from consultants to students all wanting to take look at this person with MSA. One even asked if she could practice her six minute upper body examination routine. One senior anaesthetist asked what the problems were, with my answer MSA His face was a joy when he corrected me with MS. Short lived I’m afraid and the smile disappeared leaving him in front of the crowd asking his younger colleague what MSA which he delivered a perfect reply. Throughout the day and next few days I’ve lost count of the medical staff correcting my MSA to MS and back again. Things haven’t got much better throughout the other support departments. "How come you can’t do the simplest of things" - "Your not trying" - "It takes you this long to do that"!!! To be fair not all NHS staff are bad there are a good few who deserve a 100% pay rise as they are a credit ton their profession. Some of the others need to take a long look at themselves!
Since when does MSA have a silent A i... - Multiple System A...
Since when does MSA have a silent A in its title?
Hello,I share your frustration.
A while back I took my wife to A&E and a locum doctor asked what she had and I said Multiple System Atrophy.
Doctor said no dear you mean Global System Atrophy.
I said no, I know what I mean and it's MSA, doctor wrote it down and I assume when we left she looked it up on the internet.
That aside I do hope get the help you need.
Take care
Derek
Hello. Jackie and I tend to always try and say the full 'Multiple System Atrophy' rather than MSA to avoid that inevitable "Oh yes I know all about MS"!
We also tend to say to health professionals "I doubt if you've heard of Multiple System Atrophy, most health people haven't" then you are more likely to elicit the honest response...no I haven't.
yes! If you can, give the professionals the opportunity to say that they haven’t heard of it, or haven’t seen a case without them feeling stupid or unprofessional. Great advice Ian
I recently had a mammogram and she asked why i was using the disabled facility. I used the fill term many times and all she seemed to hear was Multiple. She wrote Multiple Sclerosis on the form 🥲
Hi Yango no thank you for your reply. You’re right it is better using the full worded version as it does get a more thoughtful response. Most people are generally interested in talking to you about your condition, just gets a little frustrating when they seem to race ahead. 😃
Rare things are rare.
when I had a trip to A&E i got the admission nurse to write "MULTIPLE SYSTEM ATROPHY" in letters 1" high at the top of her paperwork, together with a note that infection does not cause elevated temperature.
Wearing the msa trust lanyard might help as well as flashing their card.
hiya Reverend Badger thank you for your reply. Good point about the lanyard. Will add one to my "grab pack" 👍
RI can't tell you how great it is to read of the problems you're having having! Sorry i don't mean that in a nasty way tho I know that's hoe it sounded 🤪 ! It just goes to prove I'm not the idiot I was beginning to think I was, I CAN string words together to form complete sentences, in English as well as apparent gobbledegook. I find people have only slightly different reactions to having it explained ranging from "I don't think you've got that quite right dear" <i I swear I'm gonna level the next person who calls me dear> to@ how awful I'm so sorry as if they've put something in my tea. Infuriating isn't it. Hang on in there we've just gotta hope they do find a cure before everyone has heard of it.
So sorry can't get rid of the underlying now ...... maybe they ARE right and I am that idiot!!
Hi After my partner Rich was diagnosed with MSA-C in September last year we thought we had better make appointment with our GP practice to discuss what happens next. We were just given any GP in practice. She was quite new to the practice. She instantly knew what MSA was. She was very aware of how it can affect the patient. She is very pro active and she is very understanding. I wouldn't call it lucky but it helps when dealing with this rubbish disease.
all the work the Trust and the patients have been doing over the years ti get MSA better known is paying off. My husband died nearly ten years ago and for the previouseight years no-one at all had heard of it...and many cases were undiagnosed especially the young onset Now it is getting better known especially among youger medics, but you need to be wary of "Sir james" and his retinue. Well done all of you and keep up the good work
the trick is as you have found, always have some introduction to MSA leaflets and a hospital pack ready, but also use the full title of Multiple Systems Atrophy and have a written piece of paper that explains how your disease affects you, rather than the last patient they saw or the first thing they read!
I hope that you recover well from your procedure keep on fighting the good fight!!
Diane
yes yes yes... ALWAYS always use the full name. there are so many diseases with M in their name.and most of them are better known and none are the same ! one of the great differences is temperature control. i don't want to scare monger but if you are in hospital with a UTI and they think you have some other disease' when youur temperature drops they WILL send you home ,and you willl not be the first person to be dead within days.. Over the years we have had posts from distraught partners begging us to use the full name so that they know that temperature is not to be relied on
I remember mum having to go to A&E, we had to wait forever to see a doctor, at 4am a young lady arrived and said she'd been heard 'there was an MSA patient' and had been told to go and a look because it was so rare! Ended up spending a good half an hour trying to explain the uniqueness of the condition and why the treatment the A&E staff said was needed wasn't appropriate....that continued for the next 3 years, constantly having to advocate...luckily we ended up with a great consultant, but it was a constant exhausting strain to get those caring for mum to understand.
Even after over 2 years of caring for mum, during the heatwaves last year, I ended up having to sit with mum for the whole time for her safety as one of the nurses at her nursing home still did not understand mum would struggle because she couldn't control her temperature and by that time was struggling to drink by herself...
I did end up putting together a pack on 'Mum's MSA' - just in case she had to go to hospital and also for the nursing home staff . Problem is doctors will look it up and see a generalisation of the condition and not how it affects the individual.
Sadly it's all the joys of a rare condition. - advocacy from the patient and carers is crucial - we live it 24/7 - others are unlikely to ever see a case! That needs to be appreciated.
Its not surprising really. Just be prepared to educate people. You are the best advocate for your condition. Xx
I was impressed with a doctor at my spinal injuries review who knew what it was and asked pertinent questions. I was impressed.
I am interested in your spinal injuries review Monkeyfeet. My husband’s first head scan showed a broken c1 vertebrae. Neurologist and neurosurgeon said there was no link between that and the MSA-c. Maybe there isn’t. But 2 ladies I’ve met tell me their husbands had injuries or underlying conditions in the head/neck area. I’ve always wondered if that was just a coincidence.
I don’t believe it’s coincidence. After spinal surgery I had bladder problems and was numb from the waist down. I eventually had a stay in a spinal unit and they follow up annually. I’ve since recovered these functions.
mine was lumbar region.
luckily my doctor knew what it was as his sister in law had it , it really helped with treatment for my dad , such a rare disease, but similar to parkinson’s , that’s how i describe it to people x
I tell them "Multiple system Atrophy which is very rare", and then when they blank stare at me, I tell them it is like the first cousin to ALS -which most everyone has heard of- and then I tell them except it happens in a different part of the body. It helps them get a little understanding very quickly.
my wife had MSA 10 years ago not many doctors new or heard of disease people still not education into this horrible diseaseQE hospital asked my wife to come to hospital ever 2 weeks when junior doctors do there rounds not many picked up what my wife had all my knowledge of the disease had to find out myself looking up internet
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