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Any GPs or neuro specialists? Very ill brother.

13 replies

Ataxicbrother · 10/08/2019 18:00

My brother is 43. He's had badly controlled diabetes since his teens (type 2, but carried on eating cakes, chocolate and junk food, he is now on insulin and other meds). He also has a skin complaint that he takes immunosupressants for).

Two months ago he had double vision and was sent by the GP to A&E. He was then blue-lighted to a stroke unit and was diagnosed with a stroke (can't remember the name but near the brain stem on one side). He was discharged the next day.

He then began falling at home. He was taken to hospital a few times (as he is very heavy and couldn't get up, and lives at home - dad is recovering from bladder and kidney cancer, has stage 4 kidney disease and bad COPD, and mum is tiny). He also damaged his heads during the falls. Each time he was sent for CT scans, nothing was seen and he was sent home.

This carried on for a week (including him soiling himself as he couldn't get to the toilet in time). He stumbled all the time, and his speech was slurred.

7 weeks ago he was finally admitted. To start with the doctors told my parents that it was diabetes, then it was pychosomatic. They also said that they made a mistake and he hadn't, in fact, had a stroke.

I saw a consultant 3 weeks ago, who said that he had a stroke, but it wasn't that which were causing his symptoms. They are positive on that (they said it was a TIA, and there is no damage seen from the several scans; MRI & CT). He had a few lumbar puncture tests which showed high WBC in the CSF.

After an EEG he was sent to the top neurological hospital.

They have diagnosed him with ataxia (he cannot swallow properly and needs everything minced up), his speech is slurred, his eyes don't open fully and his vision is blurred. He needs to be lifted onto a comode and cleaned, and encephalitis.

The doctors suspect either a rare autoimmune disorder or a rare genetic disorder (apparently a test for VCJD has ruled out that being a possibilty).

The hospital say they are considering a plasma exchange.

We cannot find out anything. When we ask for test results we are told they take ages to come back. But my parents are besides themselves (my dad expecially worries me).

He also gets angry and tells my parents to 'fuck off' and is very nasty.

The doctors seem to have suspicions but won't share them.

Any ideas (one family member does think it's in his mind Hmm

OP posts:
Ataxicbrother · 10/08/2019 18:01

especially, not expecially

OP posts:
MummyOfTwo92 · 10/08/2019 18:05

No advice OP.
But didn't want to read a run. My grandad has diabetes undiagnosed for a long time which has caused lots of problems. Doctors didn't even realise he had had a heart attack till 3 weeks after.

Hand hold if needed. Sorry your going through all this x

SaskiaRembrandt · 10/08/2019 18:07

Another one who has no idea but didn't want you to think your post was being ignored.

It sounds like an awful situation. I'm not sure if anyone would try to diagnose it online, but hopefully someone will come along with ideas about where you can go for further advice IRL.

Interested in this thread?

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Missillusioned · 10/08/2019 18:13

Was he verbally aggressive before this happened or is it a new thing?

stucknoue · 10/08/2019 18:16

A n acquaintance/client type person of mine has had similar issues though not as fast onset, he had diabetes, and caused during his time as an alcoholic, a head injury - he's now got Carr 4x a day from being quite self sufficient 2 years ago

Ataxicbrother · 10/08/2019 18:26

@Missillusioned he was already pretty laid back, so this is a new thing.

Thanks for all your comments Flowers

They don't think it's related to his diabetes, the tests they've done have pointed to something else (they said this but not what).

He's also lost 4 stone in the last 5 weeks.

OP posts:
Missillusioned · 10/08/2019 21:13

I'm not a doctor, but personality changes could indicate some sort of brain injury, although some infections can also cause confusion.

Hope you get some answers soon

Tojigornot · 10/08/2019 21:20

Is he in the Walton?

Ataxicbrother · 10/08/2019 22:51

@Tojigornot - in the John Radcliffe.

OP posts:
CilantroChili · 11/08/2019 01:55

No advice but just wanted to offer a hand-hold x Tough times, hang in there OP FlowersBrew

Nat6999 · 11/08/2019 02:31

Plasma exchanges are nothing short of a miracle when they work. My exh had a series of 6 exchanges for a bad MS relapse, he had the first exchange on the friday, the next the following Monday morning & by after lunch managed to walk the length if the hospital corridor, he had been unable to walk, in a wheelchair & double incontinent before the exchanges started. By the time of the last exchange, he was able to walk unaided for the first time in a year.

Ataxicbrother · 11/08/2019 12:50

@Nat6999 thank you for sharing. Glad to hear that plasma exchanges are so effective (I'd never heard of them till the hospital doctor mentioned them).

Sorry about your exh, the school where my brother went seems to have an unusually high amount of MS sufferers (including two friends of mine, and an ex boyfriend). It's a really cruel disease Sad

OP posts:
MWNA · 11/08/2019 16:15

I'm a neuro nurse (amongst other specialities).
Have his medical team explored Guillain Barre Syndrome? He doesn't fit exactly from what you say but could have an atypical presentation.

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