Stridor in MSA

[Laxey]

I was originally diagnosed with Parkinson's but last year i developed Stridor and my symptoms both changed and escalated quite rapidly. It is now suggested i may have MSA albeit Stridor is not a common symptom of this. Does anyone else have experience of this? Also, have you tried CPAP as a treatment to help with the breathing and reduce fatigue?

[Oliverwindsor]

Hi, what you have is sounds exactly the same as my wife experienced, and as I expect the same as a lot of people on this site, firstly we were told it was Parkinson’s and it rapidly worsened then re-diagnosed as MSAc. As I think most people here would agree. I’m sorry, we have not been in this position for long, just a couple of years now but her health has dramatically changed. The one thing I can 100% guarantee is the use of CPAP. Without it she can’t sleep, breath properly and experiences fatigue very quickly. What a wonderful invention it is, I would certainly recommend it. Our doctor gave us a referral to the sleep clinic at the hospital so was given our unit for free otherwise they can be hundreds of pounds to buy. I wish you all the very best for the future,

[Laxey in reply to Oliverwindsor]

Thank you - that is encouraging. We are hoping to get the CPAP sorted shortly. My recent ENT appointment showed I have a 40% reduction in my vocal cords (stridor). Is this also similar for your wife?

[Oliverwindsor in reply to Laxey]

Strangely not a lot of change to her vocal cords other than to say, during conversation she starts to sort of mumble. She knows this is happening and it clearly frustrates her. As you said about tiredness, she has this ability to just fall asleep, that’s standing or sitting!! So be careful if your getting tired. You can tell when she starts to go as her breathing gets loud, almost like snoring...But, as soon as we put the cpap mask on she instantly relaxes. I hate to say it in a mercenary way but we both get some quality sleep.

[binnyrox]

HelloI have been diagnosed with MSA; however I have no symptoms of Stridor.

But I do use a CPAP and it helps me immensely as it helps consistently deliver good oxygen levels to my brain. Without it , I would be fatigued and down with brain fog that prevents me from doing much

The drop out rate for CPAP is quite high, but I followed these desensitization tips and it eased the use. Trialing it in on before bedtime when I watch tv for a few days before actually using it to bed did help. Otherwise, there are just so many things to get used to

I can't recall where I copied the following CPAP Desensitization Steps

but it helped

"Wear the CPAP mask at home while awake for one hour each day.

Attach the mask to the CPAP device, and switch the unit "on". Practice breathing through the mask for one hour while watching television, reading or performing some other sedentary activity.

Use the CPAP during scheduled one-hour naps at home.

Use CPAP during initial 3-4 hours of nocturnal sleep.

Use CPAP through an entire night of sleep.

Advance by one step after each five days, once the first step can be carried out without anxiety"

Whilst I do not have Stridor, I had a weak voice, problems swallowing and pooling of saliva

However, with the help of a speech therapist, it has improved tremendously

From her, I gathered that when treated earlier - with lots of assigned exercises to be done daily, it can delay many problems. Hopefully, the same can be resolved with stridor

If anyone needs more info on speech matters, I am on my 9th session and would be glad to share salient points from what I have learnt. From what I been through ( I did start therapy early) it did help me a lot

KInd regards

[Laxey in reply to binnyrox]

Thank you. I have an appointment with my respiratory physio on Monday so hopefully I will get more news.

[vis1]

Hello, my sister had Stridor . Before diagnosis ,my brother in law recorded her sleep one night, and showed it to the consultant when she went for her appointment. The consultant said that he had never seen or heard such a bad case of Stridor and he immediately prescribed the CPAP machine. This bit of equipment was so important for her , She said that the masks were uncomfortable so she used to buy her own that were quite expensive. I really wish that she had seen the helpful hints from binnyrox below as I'm sure that she would have got more from the machine. My sisters voice did get quieter and her speech more difficult to understand but starting therapy early and keeping at it, is the very best you can do. Let us know how you get on.

[Laxey in reply to vis1]

thank you - still waiting to try the CPAP machine but helpful to see how it has helped others

[chester2107]

my dad who had now sadly passed refused speech therapy , he was 83 but I would definitely recommend it as early as possible as we couldn’t really understand anything he was saying eventuallyi hope you get the help you can and contact msa trust org as they are so helpful , they will give you lots of advice and help

with everything

elaine

[Andrashko]

I would definitely recommend you get a Cpap if you have stridor. My husband has MSA-C w/Stridor. From what our neurologist says, this is common with MSA-C. He won't sleep without his cpap now, even when his mask cushions tear (and they do within a few weeks), he will tighten the mask as tight as he can. Here in Colorado, our insurance pays for new mask/cushions @1 per month. We find that we are needing to purchase the cushions on our own, as 1 a month is not enough for him, as they tear from use.

[Laxey in reply to Andrashko]

That’s good to understand - thank you