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Could this be a form of MD?
Hi –
My mum has been struggling to find a cause/diagnosis for her health issues and is confused about it and anxious about the future.
I wonder – does anyone here have any suggestions about steering her doctors towards something that might be a cause? I know that’s their job, but it’s so difficult when being referred and referred and referred to different siloed specialists.
She was thought to have MSA (Multiple System Atrophy), but MRI of the brain suggests that’s not the case.
Her symptoms are:
+ Unable to hold her neck up, so has to use her hand under her chin (this has happened quite quickly over the last 18months)
+ Stridor (one side of her larynx appears to be paralysed from video investigation)
+ Struggles to get enough air in if under stress and exercise. A recent UTI put her in hospital as her oxygen saturation went low.
+ Reflux – yesterday she bent over and stomach acid came out of her nose.
+ Occasionally choking on food
+ Complete urinary incontinence
+ Vision issues
+ Some balance issues – she has fallen a few times, once breaking her collarbone
+ Nightmares and restless legs at night. Out like a light, but always same recurring nightmare 90 mins after falling asleep.
+ HyperacusisDon’t know if it’s relevant, but as a child she was very ‘double-jointed’ and also had surgery on her hands to release trigger thumbs, we think.
She is very keen to have a diagnosis, because then at least there may be some occupational health suggestions, or maybe even some treatment if it turns out to be something autoimmune. Currently she is not under any treatment for these symptoms other than bisodol before bed.
If anyone has any thoughts, I’d be very grateful.
Thank you!
Graham
Reply To: Could this be a form of MD?I apologise for not replying more quickly but I have been away. I believ that the symptoms you list, which must e so debilitating, could be MD but could also be many other things. They all seem to be neurological and thus a visit to the neurologist would be appropriate as would and MRI scan. A true diagnosis could be carried out by a beurologist with a DNA test to establish if there is and MD link. The lack of treatment does concern me as there are many symptoms which could possibly be helped quite easily like hyperacusis for instance.
Do please keep us informed on progressMike
So many love songs, so little love.
Reply To: Could this be a form of MD?Many thanks for the reply, Mike. We will keep plugging away with the neurologist and hope that we can at least make my mum’s life more comfortable and enjoyable.
Thank you!
Graham
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