What Were Your First Symptoms of MSA?

[rideabike]

Just a brief post for those of us who have questions. I'm sure there will be a variety. Thanks!

[Yanno]

Jackie’s first symptoms was a loss of balance. We would go for a walk - we were very keen walkers and mountain walkers - and Jax would “lose her balance” and fall mainly to the right. Not a good combination with absolute zero fear of heights which Jax like to demonstrate on many occasions!! As for me - I had to fight every step of the way when in exposed places - often with Jackie coaxing me on saying how “you’ll be okay” .

Take care everyone, Ian

[rideabike in reply to Yanno]

Thanks for sharing that Ian. Nice you have each other. Warms my heart!

[Crodiet]

Sue’s first obvious symptom was her head tipping to the left, she knew things were off but controlled the tremor to the point you couldn’t see it, but the professor found it by putting his hand on her head. Hope this helps, but every one is different and diagnosis is an ongoing process, there is no definitive test.

[rideabike in reply to Crodiet]

Yes I'm sure seeing variations. The web doesn't tell about these things. I've had the Pisa syndrome several times at night when I got up to go. I tried to straighten but couldn't until I sat down on the pot and walked back to bed straighter. Thanks for the reply!

[MSA1]

I was bumping into things.

[TK-67]

mum was initially diagnosed with PD. Her first MSA symptoms after 7 years were:

- hallucinations

- smaller times within her drug 'cycle' when she was able to function - breathing and mobility would be challenging

- the above got much worse very quickly - over around 3-6 months now we look back

- a sudden 'attack' when she couldn't control her temperature

These were all identified as being the effect of the PD drugs now being ineffective. She is now on considerably less than a year ago.

[rideabike in reply to TK-67]

Thanks so much for the reply. It's very helpful.

[TK-67 in reply to rideabike]

Forgot to mention the antecollis - this appeared at about 5 yrs post PD diagnosis. We later found it mentioned in a consultant letter that this was highly unusual in PD and was likely to be MSA, it was never followed up! Mum didn't have any BP or bladder issues until recently and also sufferers from moderate REM sleep disorder. We're told though that she is at the rare end of what is already a rare condition. The classic MSA symptoms really didn't emerge until a year ago and then they became extreme very quickly, it's taken many months to get her drug regime sorted as some attempts were disastrous.

[rideabike in reply to TK-67]

Thanks so much for that addition. Antecollis dystonia must be very hard on the neck and I hope botox is offered there for your mum.

My consult report was ignored as well.... frustrating. It wasn't just around the corner as I had to travel and stay in a hotel for the early appt. the next day and waited a year to find out I had dystonia.....like it wasn't significant enough or maybe they just didn't bother to read it all the way through. Good she has a doctor who is working to get the drugs right. It's only when you do the digging that you learn so much about the huge impact this disease has on people like your mum and family.

[TK-67 in reply to rideabike]

she had it but it had no effect I'm afraid. That was the beginning of the very rapid deterioration. We've had an awful year with different doctors, and in the end it was only because she fell badly in her first nursing home (dreadful place) and broke a hip last November that we got our present consultant who is an MSA expert (there aren't many!) and she's done a lot of work on mum's drugs. It's changed our world so much in such a short time and mum is only 73. She is now cared for in an amazing nursing home who understand her and her condition. It is critical to get the right experts, we've had to shout so much for mum, it's been exhausting but we had no choice - I'd do it all again in a heart beat.

[rideabike in reply to TK-67]

Lovely daughter you are! At 73 to go through all of that is a real trial. Hope the days ahead are a bit better with understanding and kindness, something there is too little of and more precious than gold.

[TK-67 in reply to rideabike]

very wise words - I hope so! The pandemic has also made it that bit harder but we did see her for the first time in 11 weeks last week and she's managed to get the hang of video calls! The home have been amazing with her - we're very grateful! I do of course know a lot about MSA now - someone has to!

[rideabike in reply to TK-67]

Is she taking levodopa? If yes how long does it work?

[TK-67 in reply to rideabike]

Yes - dosage with the PD diagnosis was consistent for 7 years. The effect wore off quite drastically with only less than hour of 'normal' in every 4 hour cycle. For mum it caused hallucinations and REM sleep disorder so the dosage has been scaled back considerably. This was the key thing in her MSA diagnosis that she wasn't responding in the same way as PD patients. Our first consultant didn't seem to be able to respond to mum's symptoms effectively, we're lucky to have an expert now. Mum's condition is quite advanced now and as the levodopa wears off she struggles with her speech and breathing but the alternative is back to just awful side effects for her.

[rideabike in reply to TK-67]

Sounds familiar....specially breathing. Thanks again. You've been a great help! Hope your day is awesome!

[Hidden]

Hello. Bladder control, a slow gait and a fixed stare. My new partner at the time thought it was the disapproving Dad stare, but it was just that his gaze would get stuck in one direction 🙂 Kx

[rideabike in reply to Hidden]

Thanks Kay. Had to chuckle at the disapproving dad stare. 😐

[FredaE]

With hindsight the first symptoms were there 35 years before diagnosis, when overheating in the bathhouse of a north German barracks during his National Service led to him having to be dressed for gurard duty by his fellow soldiers because he could not cope with buckles and buttons, the second was a totally unexpected fall when we walked to the church for our daughters wedding thirty years later and the thing that led to diagnosis was slowness of speech and reaction time twenty years later at the age of seventy.

All the books tell you that the most common first sign for men is erectile dysfunction but you need not expect any help there as the medics seem to ask what do you expect at your age? - they ought to know better.

I have spoken to many patients who think they recognised symptoms when they were much younger but just put them down as a personal idiosyncracy. For example I was a pottery teacher with a very strong 3 dimensional ability and we always joked that he was the only person I had ever failed to teach to draw perspective. ...failure to cope with 3 dimensions is one of the minor problems with some MSA patients. In his case he often put a coffee cup down so it fell off the edge of the table and missed when filling a glass with water at council meetings....just one of his funny little ways.

Thank goodness we did not know what it was as it would not have helped and just prolonged the misery

FredaE

[rideabike in reply to FredaE]

Interesting to hear these symptoms over a long period. I keep going back to incidences that ring some bells with me too. Thanks so much for the reply!

[FredaE]

I forgot something important - everytime he had to have a medical - new job or insurance -they ALWAYS said - well done you havethe blood pressure of a man 20 years your junior. We were proud of that!!! Oh dear

[rideabike in reply to FredaE]

His blood pressure must not have been too low though. That's another sign isn't it. I have to monitor mine more often but I know it is low. Thanks for remembering. Quite important and will motivate me to check it more often. 🤔

[FredaE in reply to rideabike]

it was, with hindsight, too low. The basic view is that high blood pressure is always a problem but low is not. It isnt until you fall over every time you stand up that people sit up and take notice, unless you have a docor who has met MSA before and willhave suspicions

[Keycode]

Hi, my mum was diagnosed with Parkinson's to begin with and her first symptoms were loss of balance she had a few falls whilst she was still working, I noticed the fixed stare quite early on, I remember thinking she always had an expression is if something terrible had happened and it used to take me by surprise at first. She also struggled moving her arm, her shoulder stiffened and then her fine motor skills started to suffer. It is a very cruel disease but everything progresses very slowly so I would definitely say make the most of what you can do now and try to enjoy your time without thinking too much about what might happen in the future x

[rideabike in reply to Keycode]

Thanks for the reply and input to my question. It makes a person have more empathy to see the struggles some of us have. I compared my drivers license photos from just 2 1/2 years ago and I see the stare too. It is a very cruel disease but each day I try to focus on something beautiful. She's very fortunate to have you.

[FredaE]

Good sense from Keycode. Do it now - you can do it again laterif you still can.

[Derkie54]

Bladder control & falling are the first symptoms I can remember, it really does vary person to person.

[IvyRose64]

Hello there, Alans first symptoms appeared 7 years ago although when I think back it may have been as many as 10. The reason I say this is because it was about then that he started to kick me in his sleep and 'act out' dreams. I also got a lot of hair pulling and being woken up in the night with shouting and even very loud laughter. We were in Italy celebrating our 25th anniversary (10 year ago) when he work me pulling my hair. He said he's been dreaming that I was falling off a cliff and he's reached out to grab me! However, about 7 years ago he started to lose his balance his once beautiful handwriting was illegible. He thought he has MS as his mother had it from the age of 17 until she dies aged 62. The test came back negative and he was refer to the Neurology department at Queens in London where he was diagnosed with Ataxia. Over the next few years he deteriorated very quickly and other symptoms manifested themselves so his diagnosis was changed about three years ago to MSA. He has since the hair pulling incident been diagnosed with REM sleep disorder and sleep apnea and has a Cpap machine.

[rideabike in reply to IvyRose64]

Thanks very much for that insight to his behavior. Sorry but I had to chuckle over him thìnking he was hanging on to you over a cliff...by hair. I know it wasn't funny at the time.

I sometimes wonder if REM starts with multiple vivid dreams. Never had that until last year. There is no one else in the house to tell me if it's more than that....or attack, thankfully. I'm sure this is difficult for you. Muçh love to both of you....Linda

[IvyRose64 in reply to rideabike]

LOL, yeah we laugh about it too. One of the other things I forgot to mention was the heightened emotions. Sometimes when he finds things funny he gets hysterical laughter and what he's laughing at isn't really that funny, likewise we get lots of tears. He gets so emotional when he sees the grandchildren for example. I am a bit mean I'm afraid and sometimes when he's been a bit emotional while watching something on the TV I say , "for goodness sake it's not Andrex puppy advert you're watching.' When my daughter got married in 2018 he wasn't able to read his speech so my other daughter read it out. Once he started crying the whole room was in tears, a very emotional day. He'd been ill in hospital the day before and we didn't know if he was going to be there, thank fully he was well enough to attend but was back in the next day.

[rideabike in reply to IvyRose64]

I've read about the heightened emotions. A sense of humor sure helps more than we know for all of these new challenges. Wonderful he was able to be at the wedding!