Aa
medical mystery of undiagnosed neurological condition
My dad is 74 and currently a medical mystery. The doctors at West Suffolk and Addenbrookes seem to have exhausted their options. they have ruled out MS.MND,Parkinsons. He had an attack of the heart (not a heart attack according to papworth) which resulted in a stent. He then within 2 days suffered a stroke likely from the stent fitting it seems. He has over the past year had brain bleeds so the warfarin was been stopped. He has been left with AF so is potentially stuck between a rock and a hard place.
His symptoms are ramping up the pace and he describes it as "creeping over him"
Main issues now are:
- his legs give way like a light switch, once on the ground he then is numb from the trunk down for 5 to 10 minutes before being able to assist himself with help into a wheelchair
- some days he can walk a little with a frame, other days can barely lift his limbs
- severe leg pain most of the time
- extreme fatigue
- difficulty controlling his bladder and bowel
I am so worried that he is giving up and whatever this is, is taking over his body. Addenbrookes seem to think there is something in the blood, but it doesn't have a name and may well be a new condition. we are yet to receive any answers since these 21 samples were taken. Someone in the world must have seen this before. I would be so grateful for any guidance or help.
His symptoms are ramping up the pace and he describes it as "creeping over him"
Main issues now are:
- his legs give way like a light switch, once on the ground he then is numb from the trunk down for 5 to 10 minutes before being able to assist himself with help into a wheelchair
- some days he can walk a little with a frame, other days can barely lift his limbs
- severe leg pain most of the time
- extreme fatigue
- difficulty controlling his bladder and bowel
I am so worried that he is giving up and whatever this is, is taking over his body. Addenbrookes seem to think there is something in the blood, but it doesn't have a name and may well be a new condition. we are yet to receive any answers since these 21 samples were taken. Someone in the world must have seen this before. I would be so grateful for any guidance or help.
I'm sorry, spelling error: cauda equina
1 Comments
Oh my goodness, I have looked it up and he seems tick on the boxes! He also gets a lot of uti’s which also seem to be a symptom. This could well be a breakthrough, he has never been tested, it has it ever been mentioned!
Now to find a hospital and or doctor with any k owl edge and experience of this. If you are familiar with the syndrome and would be able to point me in the right direction I’d be so grateful.
It’s not the best diagnosis if it is that, but knowing potentially what it might be is a comfort to him nonetheless.
Thank you so much for taking the time to read and respond, very much appreciated x
Now to find a hospital and or doctor with any k owl edge and experience of this. If you are familiar with the syndrome and would be able to point me in the right direction I’d be so grateful.
It’s not the best diagnosis if it is that, but knowing potentially what it might be is a comfort to him nonetheless.
Thank you so much for taking the time to read and respond, very much appreciated x
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