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Living with partner with undiagnosed neurological condition

#173 by Esther

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. :pinch:

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. :blush:

How often is it that neurological conditions go undiagnosed? :dry:

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... :S

Thank you :cheer:

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#174 by Janet
Dear Esther

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.

Information and Advice Officer

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#201 by starlight
Hello there Esther,

Just wanted you know,  I really do understand you and your partners situations.. Not having a diagnose is frustrating.

I have learned over the years, there are many neurological conditions without a name,  Mine included.  I have never been diagnosed with
the Diabetes, for example.  I have been living with the problems of Ehlers Danlos syndrom for over 10 years now.  Over the years, the frequent , spasms,
cramps, and loose ligaments of this condtion does cause in time, peripheral nerve damage.  I have multiple pheripheral nerve damage, diagnosed last
year as being linked to connective tissue disorders like mine. 

I was sent to a specialist because i did not fit the Diabetes complications of nerve damage.  EDS, is not hugly recognised my many  health professionals, but nerve damage is a complication of EDS over time. 

I understand the frustration you and your parnter must sense and feel. 

I am awaiting another pain managment course to understand how to live and cope with nerve damage.  It is very deblitating and has taken away much
of my life.  I am mostly housebound. 

I agree we could do so much if only their was a diagnoses.  But I believe that accessing a pain
management course would be helpful, in understanding how to live with the symptoms as a starting place.

I wish you both well and hope your partner gets the support he greatly needs.

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#205 by DragonflyTV
Dear Esther,
I'm sorry to hear your husband has been suffering with so many debilitating symptoms. I wondered if we may be able to help with his medical condition?
I’m a TV Producer and we’re currently producing a BBC medical series where Britain’s sharpest medical minds use their combined expertise and diagnose the most complex cases in
Britain. We’re looking to talk to people who are struggling with a number of symptoms but are yet to get a medical diagnosis and could do with experts reviewing their case. It would be great to have a chat with your husband on the phone to understand a bit more about his condition.

The TV company I work for is called Dragonfly, the award-winning company behind acclaimed series such as BBC1’s Ambulance and One Born Every Minute and BBC2’s Surgeons: At The Edge of Life.
If he is interested, please do email: enquire@dragonfly.tv  or call 0207 033 2254. All applicants must be 18 or over.
Enquiries will be treated in the strictest confidence, in accordance with Dragonfly’s Data Protection Policy: http://www.endemolshineuk.com/contributor-talent-privacy-notice/
If you’d like to find out more about what’s involved, or are potentially interested in taking part, call the team on 020 7 033 2252. Alternatively you can email us at
Dragonfly is one of the UK’s leading TV production companies and has experience of working with people with medical issues. Read more about us at http://www.dragonfly.tv/
Best wishes,

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