Hopefully our profile blurb outlines who we are, but to flesh it out a tad...
J was diagnosed approx' 5 yrs ago with Parkinson's, which was obviously a blow as she's always been very physically active and at 55yrs old it was a million miles from what we had thought might be ahead of us...but that's probably the same for the majority here I guess.
The changes in J's physical condition were becoming quite rapid and pronounced, leaving me to look at what / why things seemed to be changing faster than others we'd made contact with over the past years. Yes, I know everyone's different, but my inkling was that something's not right.
Four months ago at the last Parkinson's consultation we brought up the question and based it around the following symptoms...
Madopar (Parkinson's medication) - has limited impact and lasts only 1.5 hrs
Stooped (very) to the right posture - walking / sitting
Head & feet - feeling cold and very hot
'tight' head
Feet - feeling like they have sun burn
Dizziness & tiredness
Weight loss - significant, generally very fragile
Strength - significant loss of, unable to chop vegetables / carry items / undo jars
Stiffness of neck & shoulders - coat hanger
Significant swallowing issue - 1.5hrs to eat a dinner, occasional choking, dribbling
Incontinence - also bowel worries
Speech is very weak
Insomnia - average sleep is 3-4hrs per night
These are current symptoms but most were apparent 5 months ago but some probably to a lesser degree than now.
After pressing the question a little, J was passed to an Atypical Parkinson's consultant specifically to assess MSA. Then Covid kicked in so no physical assessment was completed but rather two online video assessments and subsequently MRI scan was completed two weeks ago...results pending. We also have an appointment with a Neuro Urologist in two weeks , and we've just completed a sleep study. All of this will hopefully provide some data and info to better assess J's condition.
We don;t know when a full assessment visit will be completed, and understand that there's no single test to determine MSA etc, however I'm from an Engineering background (robotics) and always look to have as much data /evidence as possible to provide as wide a scope to allow decisions & actions to be made.
So, my question is ....does the above sound familiar in your own experiences?
Written by
Boyyo
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Welcome to the forum albeit as we say every time, it's sad you need to be here.
Your experiences seem to in many ways reflect those of Jackie and I. We both loved sport, skiing, hill walking etc and it's giving up those things which sometimes hurts the most.
Having said that, we approached the demon of MSA with a positive attitude knowing what will be, will be. None of us can change the past, nor can we predict the future; all we can do is make the very best of today. My number one bit of advice would be to live life as full as you can and make as many memories as you can, while you can.
I don't now if you're aware of the MSA Trust. If not it's well worth looking at their web site and getting to know your local specialist nurse - they are always available by telephone. The MSA Trust website has a number of downloadable documents that will give you much detail on the typical symptoms of MSA. Your list is long but sadly many with MSA have a long list of symptoms. Many you list are shared by my Jackie however one thing you will learn is that there appears to be no 'standard MSA'. Everyone's journey is different and whilst you may stop of at some of the same places and have similar symptoms; your route will be unique to you and not the same as the next person.
One of the other things you may find helpful is to join a support group. The Trust will tell
you which group is closest to you. Many of the groups are continuing to meet albeit on a virtual (Zoom) basis. Our group has found the virtual meetings to be easier than our previous face to face meetings and we now meet monthly.
There are so many people in this forum who have so much information and support to offer, and so just ask away!
We'd only really just started getting to terms with the principles of Parkinson's, so the thought of it being something different, although not yet fully diagnosed, is very much a kick in the guts.
I'm just looking ti get a general feeling of other peoples experiences ahead of formal reviews with consultants in a few weeks time, as it's better to have discussions armed with with a reasonable amount of info' than to meet and then start digging into things. I'm really hoping that I'm wrong, and will be happy to have wasted mine and other peoples time by asking questions now ahead of meeting them, however, my sneaking suspicion having read up a little is MSA seems to fit J's set of symptoms....and its accelerating.
We're down to meet up with a team / support group in Southampton but it's not yet confirmed when this will be due to Covid etc...
So, again, many thanks for the contact from you and others.....it's good to know there's an opportunity to chat through stuff when needed.
Hi Chester...thanks for the response & I'm sorry for the loss of your Dad.
Yes J was only 55 when Parkinson's was diagnosed, and the prospect of MSA has only cropped up as I'd realised how fast certain symptoms were progressing, with certain symptoms not traditionally associated with Parkinson's.
I'm now registered with the MSA trust and will be doing a fair amount of due research....it's my bag!
Hi Boyyo, sorry to hear your story. It is very similar to my husband’s especially the rapid deterioration. However, insomnia is not a problem with hubby - it’s the opposite! He can sleep for 15 hours a day. Clearly everyone has different symptoms and we just need to use whatever resources we can to manage them.
J's always loved sleeping, almost Olympic level capability, however its rare that she gets more than 3 or 4 hours even when taking tablets to help.
Absolutely understand that everyone's journey is different, we're just looking for an idea of what peoples experiences are so that we can face up to the challenges better armed...IF indeed J is diagnosed with MSA.
I think you're the closest person (geographically) to us...we're in Poole.
Absolutely agree - always best to be prepared! R was initially diagnosed with Parkinson’s in December 15, although we think he’d had it for at least 5 years before then. At that point he could do most things, was playing golf most weeks and walking the dogs etc. Now 4 and a half years later, he is unable to stand or walk, needs help with personal care and eating. Such a cruel disease. But he very rarely complains - he is an amazing man!
The regularity of MSA being initially diagnosed as Parkinson's was something I picked up a few months ago and was a driver for me raising the prospect with J's Parkinson's consultant. I'm just amazed at the speed at which J has added new symptoms, with existing ones becoming more acute.....it's pretty crap really!
We're always having a good laugh and rarely get down, but there are days when it gets pretty hard to do that, that's why I stopped working in March to be around 100% of the time. There's no point getting ready for the future when the future is now.
J's gone from playing Tennis / Volleyball / Netball etc to not being able to walk around Tesco's or take the dog for a walk....all in the space of 3 years.
Anyway, onwards and upwards!
Can I ask if your husband complained of a tight / hot head.....or having sore feet similar to sunburn?
Keep strong and enjoy the good days. I don’t recall him complaining of sore feet or tight head - he does have facial spasms causing his eyes to remain closed for long periods of time. His hands and feet are always cold and very swollen. It certainly sounds as if J has something more than Parkinson’s
I helped care for my dad who had MSA. He sadly passed away at the end of January after being diagnosed a number of years ago.
I recognise all of the symptoms on your list apart from the stiffness in dad's head and shoulders and the hot and cold feelings. As Ian said, there is a great deal in common but everyone with MSA seems to have their own particular journey.
I was going to suggest the support groups and the MSA nurse both of which can he really helpful. I just found the wealth of knowledge on this forum and the kindness and understanding invaluable.
We tried to approach every day with a positive attitude and to carry on being as normal as possible as well as making sure mum had some respite to give her the strength to care for dad. We used humour as much as possible as dad responded well to this. The focus was always on the quality of life. We asked for help and accepted everything on offer. It's important to not try and do it all on your own as there will be times when you will need help and support.
Yep, having a laugh is something we've always done....sometimes probably a little too much .....and it's certainly not going to change going forward, although they will no doubt be tinged on occasions.
We're looking at PIP claims now, so the support network is something I'm starting to get my head around.
The symptoms you describer are similar to my father's, though he did not have 'coat hanger pain' and I'm not sure on sleep issues. I have some coat hanger pain and terrible insomnia; MSA is not supposed to be hereditary but I've been having much the same symptoms as my father. Many seem to have gotten better (I'm taking a lot of supplements; MitoQ/ubiquinol seems to fix the dizziness on standing). The insomnia is still bad, though.
My father's MSA also had some unusual features - tobacco sensitivity (there are a few case reports in the literature), a bout of rhabdomyolysis which was in addition to slow wasting of his limbs and peripheral neuropathy. He also had tinnitus ( as do I).
Welcome - we hope we can help - from my experience knowledge is the key thing to be able to manage this condition and what you and J will need.
My mum was diagnosed initially with PD 8 years ago in her mid 60s, about 18 mths ago she deteriorated very quickly as with J the drugs has less and less effect, she developed an antecollis and other symptoms began to appear including a fall (we know now this was her BP crashing). Eventually she was re-diagnosed with MSA at the end of last summer based on her symptoms at that point and the further deterioration has been rapid. We were told there was no test that confirms MSA, it's a set of symptoms. I do recall being told when mum was initially diagnosed with PD there was a caveat that it could be something else but these tend to only present in the later stages and we take some comfort that it wouldn't have changed the situation or treatment to have known earlier.
My biggest bit of advice is to find a specialist consultant, the one mum had been under since her initial PD diagnosis had little experience of MSA - it's rare so this is not unusual. It's only been a series of events and a lot of luck (and pushing) that mum is now looked after by an expert who has been amazing.
Mum is at the rare end of what is a rare condition and we've learnt over time how different the condition is with each individual. There are no rules, it's about compromises in managing the symptoms now for mum and every day is different.
And with rare conditions you will have to push and 'shout' to get the support you will need, shouldn't have to be this way. You will also become the expert in the condition as it's likely most the support services will have had little direct MSA experience and no 2 people present exactly the same. You know J and how the condition affects her.
We were given access to a Neuro Specialist Practitioner in our area who should be able to help co-ordinate the support services you will need - we have heard that this resource varies by area. And the MSA Trust were helpful too.
Mum's key issues are REM sleep disorder/hallucinations/confusion (these can be worse dependent on other factors such as infection/temperature/how she reacts to the PD drugs, BP is difficult to keep within normal range. She finds it hard to control her temperature. She had increasing anxiety, bowel problems, pain in her neck, shoulders and legs. Her mobility varies constantly but she is increasingly now using a wheelchair. Her voice disappears which is one of the most frustrating things for her - communication is key as she can no longer do simple things like use a remote control or phone.
Mum is now looked after in a nursing home, my dad died 8 years ago and she really needed 24 hour care and had got very poorly so quickly - we had to choose somewhere that was very specialised due to mum's very complex needs that vary hour to hour. Sadly it wasn't possible for us to care for her. Thanks to the pandemic it'a now very stressful due to the lack of contact we're able to have with her, we're lucky that some of the nursing staff have experience with MSA and we have had some contact with the consultant. Although any other services have not been possible to access, we'd just sorted neuro OT, speech therapy and specialist neuro physio when lockdown happened.
It's been a rollercoaster year - it's good to have this forum to come to though, you're certainly not alone! No question is a silly one here!
I agree that as much info, filtered and researched as best as possible is a key to getting a handle on it, then loads of support and plenty of open minded laughing...!!
We're just starting out with MSA and already have specialist consultants and support team headed by Luke Massey from Southampton / Poole who's an MSA specialist, so hopefully starting on the right foot.
Unfortunately, due to Covis, we're not able to get the face to face element started.
that's good news - the first few months post diagnosis without this support is not something we'd want to go through again! Hang in there, you sound like you're getting the right support and the best info! I know some people are scared of the mention of hospices but our local one has been a brilliant support for mum and me, I've just seen that you're applying for benefits - some can also help with that and give you advice.
Just thinking about coat hanger syndrome, my sister was lucky enough to get some sessions of hydrotherapy on the NHS recently. She said it was lovely! And for a short time her coat hanger symptoms were alleviated. Bliss! Is this something that J would be able to get?
Rather than answer each post, I just wanted to say to one and all a great many thanks for the welcome you've given us....much appreciated.
I've another question.
Because I've stopped working to support J, and we've decided to live off savings etc and address life when that runs out....we're starting the process of applying for PIP. In fact the document pack just arrived this morning, quite a tome!
Has anyone else completed this and been successful?...to what degree was the award of support?
Which gave a detailed guide as to how to fill in the form and what are the trigger words about repeatability of something and speed of completing a task etc. We had to go to the face to face assessment but got the award at the first application. I think that Citizens advice will help as well but I am
Not sure how that would work in ‘Covid land’!!!
Keep in with your research and getting the help you need, but don’t forget to Live!!
Sorry for my late response & thanks for the info, I'll certainly be looking into it. Apparently face to face meetings are probably not going to be completed given Covid etc....that said it could change I guess.
That website link is great and worth the £19 yo get the full 100 page report as it really breaks down the process into all the detail you could need....really good!
my hubby was diagnosed with PD some 8 years ago. His PD progressed really slowly and many of the pd symptoms just never appeared, so we were suspicious (diagnosed with MSA last year). However in the last year to 1.5 years things have gone downhill. For the past year his walking is near non existent and he relies on wheelchair and scooter. We applied to PIP many years ago and he is now on full pip payment. First we had to attend appointment and she was a experienced person who gave him the highest award she could. On follow up we were visited by another lovely lady and she gave him the rest of the pip and no more assessments for him.
As for Neuro, I can't say our neuro has been supportive at all. Don't trust him no more. But now Swindon Hospital has new PD service and a lovely PD nurse keeps in touch as well as the MSA Nurse Jill. We also now getting support from local hospice. It is for chronic illness not just end of life as she told husband. We pushed and pushed and you got to make your voice heard, especially in these difficult times.
Thanks to our persistence Husband has the Neupro patch and that stopped his debilitating stomach aches and cramps and he can do bits again and feels a little bit more settled.
But you need to be ready to make your voice heard on their behalf. We are now waiting for a talking machine, so he can grumble and mumble and the world can hear him direct again! LOL Watch out world, he has still a lot to say.
Apologies for my tardy response but many thanks in taking the time to reply.
Yes, it seems similar to J, where the PD symptoms seemed to be there but not to the degree as others we'd met, and the drugs didn't seem to work that well. Then there was an a acceleration of other symptoms which led to me asking about MSA.
I've got to say that our new 'MSA Neuro' seems really on the ball, even calling us at 9am after coming back from vacation and catching up on his msgs....so hopeful his team are as good!
With regards to PIP, I'll be challenging anything quite firmly as we're in need since I decided to stop work now....gulp!
Oh my goodness - you could be describing my sister. This is also my first post to this site. I've been reading it for a few weeks and drawn enormous comfort from the fact, that sadly there are also other people in the same situation as my family.
My sister is 56 years old and was diagnosed with MSA 3 years ago. I'm afraid that she has all those symptoms that you describe for your wife. The things that get her down the most in no particular order are,
the pill regime (30 pills a day that have to be taken at the correct time, which she often forgets despite all sorts of reminders being set),
the incontinence,
the coat hanger syndrome
and probably the worst of all, is sleep. She is getting fairly constant nightmares quite often centred around the mask she must wear for sleep apnoea, she is hallucinating and hearing voices, so its no wonder that despite being pretty constantly exhausted, she hates going to bed. She has to take an "upper" at about 9.45 pm and she can't take the "downer" until an hour later.
She has a fabulous husband who is doing everything he can to help.
It would be so useful to hear from people who are going through the same thing.
My first question concerns the halucinations – is this a common thing?
Hello and welcome!. That sounds like a lot of pills. Dad had some mild hallucination because his brain wasn't processing oxygen at night properly. However I would recommend speaking to one of the MSA trust nurses in your case, in case it might be a side effect of medication. I think they could help work out from the type of hallucination, (ie: what exactly she is seeing) as to what can be causing it. Kx
Thanks Kay. We have tried to eliminate the pill that is causing the hallucinations, but they all seem to be interdependent. So as we all know, we just carry on and make the best of what we can. Good luck to everyone.
I'm not sure if responding to my own post is the best way to add news to my original post...but hey, that's what I'm doing
Yesterday we had a meeting with the MSA consultant and another member of his team, and it's confirmed that J probably has MSA...'probably' because as we all know diagnosis is a combination of assessing a multitude of symptoms all divided by time...and voila !!
So, here we are, and now we, but specifically J, has to digest what that means. In the first instance deciding whether or not to have a a Suprapubic catheter fitted is the initial big decision...anybody got the T shirt on this one...or knows more than we do?
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.....and it's certainly not going to change going forward, although they will no doubt be tinged on occasions.
