I would be interested to know if anyone else with MSA has experienced anything like this.
My startle reflex to noise has gone weird. It works fine with a loud unusual noise but for a loud but familiar noise which should not make me "jump out of my skin" I firstly get the recognition that its a non threatening previously known noise and then I "jump out of my skin" some milliseconds later.
Even though I know this and it has happened many times it does not change.
Unfortunately, was very common. Peter's response to being exposed to anything sudden. It think it was down to his own movements slowing. He couldn't react in an automatic way to things. Xx
Yes, first noticed it a couple of weeks ago, also seem to have a heightened startle response, jumping out of my skin when the dog barks which never happened before. I put it down to new drugs I have been put on.
My very limited understanding of the exaggerated startle response is that it is caused by damage to the brain stem which happens in most forms of parkinsonism. My husband, who is dx with MSA does not have it but I do have it and it started before I was put on PD medications.
I wish I could say something to. help as you always do to others but i have no experience of this. Take care.
This is the first time I have ever posted, but have benefited from this site.
Yes I had a very pronounced startle response early on. I would share with neurologists and they looked at me like I was nuts. I saw 6 neurologists in the first 2 years,and finally number 6 gave me a diagnosis. I live in the San Francisco Bay Area , and saw neurologists at the major teaching hospitals. I had every diagnosis, but none really fit.
At UCSF I saw a neurosurgeon that was so helpful, and explained to me we are all snowflakes! I have been in several Parkinson’s groups and you are the first person I can relate to regarding the startle response.
I have been seriously sick since 2016 and went from Parkinson’s-Parkinsonism-probably MSA. My symptoms now limit me to home and family tries not to startle me. If you are still able to leave home, this will be a bigger problem. When I was active in my church community, I learned to laugh it off. Laughter truly is the best medicine.
Deb
Hi Deb, you have an interesting story there. difficulty in diagnosis and initial misdiagnosis as Parkinson's is of course very common with MSA. I'm not yet confined to home and am out and about quite a lot so as you say the startle response can prove "interesting"!
Mainly it's audibly triggered but I also get it with touch, even when my wife helps me get dressed and pulls a shirt on I get a shiver and feeling of unpleasantness as the shirt touches my back.
I have read about people with MSA and PD disliking being touched when they are bed bound, in hospice or hospital and had previously thought this was just due to the large degree of carer contact required in such circumstances. I think now it is more likely related to the startle dysfunction.
A very special day in the life of an MSA patient
7 years and the struggles now over
Frequent blocked catheters
Thank you for your kind advice
