Hi All,It's been a while since I posted but I have been lurking in the background.
My husband was diagnosed with MSA around 2 years ago after being diagnosed with Parkinsons 2 years earlier.
He has no major symptoms, shuffling when we walks, he sleeps alot during the day and has a restless arm as soon as he gets into bed at night, this leads him to be awake until around 4am.
His other issue is intermittent double vision which neither the optometrists or ophthalmologists can get to the bottom of. It's not a symptom that I've read about people having but thought I'd ask.
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Lincsoldbird
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Hello there. Double vision is a symptom of MSA. My Jackie used to suffer from blurred vision however the same issue may cause double vision. There's a very useful factsheet on eye health on the MSA Trust website which may be found here: msatrust.org.uk/wp-content/...
Thank you for this information, we have seen 4 or 5 eye specialist all saying no it's not MSA related but nothing ever is. Looks like we need to go back and try again.
They tried those with him but when I was driving home from the appointment he took his glasses off, when I asked him why he had done it, he said it looked like the oncoming traffic was heading towards him and thought we were going to have a head on crash.🙄
Yep I have it! (Diagnosed with MSA 2 years ago, slow progression). The eye thing started about 6 months ago. Eyes not tracking seems to occur quite frequently according to the NNH (London). They have their own ophthalmology department though I have used my own optician so far. One of the main problems is that we don’t blink enough and our eyes get dry - hence the problems focussing.
Loss of sight isn't an MSA symptom, but there can be blurred vision, often caused by low blood pressure. We also see slowness or jerkiness of eye movements, dry eyes- as people blink less often- and the inability to keep eyelids open for varying periods of time.
There are treatments for all of these issues. Do speak to the nurse specialist at the MSA Trust for your area for advice. An orthoptist is the person you need to see rather than an optician.
Yep, Adrienne MSA-P, blurred and double vision. Optician recommended Adrienne move from varifocal (we'd just bought those - expensive!) because of her antecollis and not being able to lift her head, to single vision and readers. Adrienne's readers were fitted with prisms allowing her to focus on a tablet on her lap to read (books, as well), and watch tv. So, a specific function, and not for distance viewing. It worked. Although she found the tablet too heavy, and has now moved onto audio books. She will lie in bed and watch tv alongside her (Olympics have been a boon!). The vision thing definitely an MSA thing. MSA Trust for all your info. I personally have printed many of the guides for GP, SALT, Carers, etc. and keep them in a small file I take to appointments, hospital admissions, etc. I also give file to carers to read when they first visit. More people around us are becoming more familiar with the disease as we come into contact with them. Another tip. Adrienne used to keep notebooks detailing her medications and what time she took them. When she couldn't manage this anymore I carried on in her tradition, filling books, dating them and keeping (a record of med changes and her illness). Lightbulb moment. This year, went to WH Smith and bought a sizeable desk diary (each double page 7 days and a spare section for notes). It records everything! Meds, visits by professionals, which carers come in, even toilet visits overnight (keeping tabs on frequency - UTI's, bowel movements, etc,). One book, one year! Another tip, recently found for myself. Because of Adrienne's antecollis, she tends to lean to left, and hangs over wheelchair. After trying various remedies, discovered this on Amazon. Sorry I went off piste, somewhat. Ian
Thank you Ian. Paul is quite new to this diagnosis 18 months but Parkinsons 3 ½ years ago and has had very slow progression so far.
He too had just bought a pair of varifocals (which is what they stuck the prisms to) when all this started to happen with his eyes. I think a trip to a decent opticians would definitely help and maybe two separate pairs of glasses.
I also think that an information folder for his healthcare professionals may also help as they either glaze over, look at you blankly or just seem to shrug it off.
Can I ask what SALT is please, that's a new one to me.
Speech and language therapist. They monitor and deal with all things connected to speech, throat, etc. They're the people to be referred to if you have swallowing, eating, or any other problems with mouth, airways, etc.
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