daughter un-diagnosed for 6 months.

My 33yr old daughter came back from Benalmadena in May after a holidaying with her husband and 2 children.

The day they got back she had pins and needles in her right foot which steadily progressed up her leg until she became in such pain she couldn't bear anyone to even touch her leg.

Her husband took her to the doctors who said due to the extreme pain she was in it's likely to be a slipped disc and she was given strong painkillers.

After a few days the pain was so bad we took her back to her gp who told us she needed admitting to hospital immediately we had a car so her husband took her straight to A&E.

She was in hosptial for 10 days and her pain was excruciating, she couldn't feel her leg by now right up to her hip but she felt the pain. Her foot has turned in at almost right angles now.

She had MRI, CT, Lumbar Puncture and intro-veinous painkillers. She was almost unconscious throughout all this time not remembering when we had been to visit her and not being awake and able to eat and she was only sipping at drinks when we were there.

Nothing came through on her test results apart from some additional white cells in her blood tests.

She was discharged without diagnosis and although she has been to a specialist Neurological Centre and is seeing a Neurological Dr, she has had no diagnosis yet and it's been six months.

Three weeks ago she has electrodes on her leg, another MRI and Lumbar and nothing came back.

Last week she had one of her meds increased and during the next few days she shocked us by losing her abilitiy to speak, we took her to the gp who told us to take her off certain meds and just use the pain killers and Gabapentin.

Her speech is a bit better but she is in pain and can only stay awake for about 5 hours then is completely exhausted. She is now in a wheelchair and we are waiting to see a specialist Dr in a week or so.

I am at my wits end watching my daughter suffer like this and still no knowing what it wrong is agony. She was very athletic and fit before this. Dystonia and Guillian Barre were suspected at first but nothing is confirmed. Can anyone help us please?

thank you

hi

i hope you got your daughter diognosed and is by now recovering.

Hi justme67

She has focal Dystonia they said. It's in her leg which now turns in at a right angle. She is in pain everyday and the meds are not much help with the Dystonia but they temporarily lessen her pain but never take it away. Her Dr is quite helpful but her neurologist hasn't seen her since November when he diagnosed her and her next appointment isn't till October. I'm disappointed in the lack of care she has and as a result of this condition they have had to put the house up for sale as she can't get up stairs safely. Thanks again for asking about her. I appreciate it x 

i'm sorry to hear that,

maybe you should ring neurologist and ask for sooner appt

seams a long time that between appt..

just keep pushing them..

good luck hun x