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Living with partner with undiagnosed neurological condition
My partner has an undiagnosed neurological condition. Doctors ruled out all the 'common' diseases and said they could do more testing but whatever it would turn up being, would be incurable anyway.
I find it hard to accept that and I wish it was properly diagnosed so I'd know "how it will end" and I can prepare myself ahead, but my partner doesn't want to, which I respect.
How often is it that neurological conditions go undiagnosed?
Symptoms my partner has are: difficulties in swallowing, shaking hands and body, pain in right leg when going up stairs or walking too much, neurons "firing" painfully in right leg and arm, general body pain, painful reaction to being touched 'lightly', loss of sense of moisture, temperature and touch in certain part of their body, and I've seen their whole body 'twist' uncontrollably for a few seconds once but apparently it's happened before a few times.
I don't know anything about neurological conditions but what they're going though is sufficiently much that I wish it had a 'name' so I could read about it and truly understand what's going on...
Thank you for contacting us on the forum. It is indeed very frustrating and difficult when you know how ill someone is, but despite all the tests no one can up with a diagnosis.
It is unfortunatley not uncommon in neurological to be unable to find a specific cause for a condition/symptoms. However, tests should continue to happen to rule out conditions as well as trying to rule in a condition. Proper support, discussion and management of the condition should still take place.
Please contact the information team 0151 298 2999 to talk in more detail to myself or one of our information and advice officers.