Neurology Mystery?

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Symptoms

My brother is  a 26 year old, generally healthy male. Early This year he started to get forgetful, which got worse over the coming months. He began getting confused at simple tasks, forgetting his route home, which he had travelled for years. Then his speech started to be affected, he started to stutter when speaking and the GP diagnosed him with Depression and put him on anti-depressants.

Since then he has been hospitalised, is now unable to speak (he does say odd words but stutters the rest of the sentence), he his getting confused about his current surroundings, losing control of his bladder function and seems to have lost the ability to read/write.

His condition, whatever it is seems to be deteriorating at a rapid rate and after a number of tests detailed below we still have no idea what is wrong him.

Tests

2 x MRI scan over a 2 month period

CT Scan

Lumbar Puncture (clear liquid, initial tests reported nothing unusual)

EEG Scan (performed by Walton hospital, waiting on results)

Number of blood tests

Results So far

The only things that have shown on the brain scans so far have shown that he has a few dead brain cells (which is apparently normal) and his brain has shrunk slightly since his last scan a month ago.

He has also been diagnosed with MRSA (the hospital bug) recently and been placed in his own room on the ward.

We are still waiting on further results from the lumbar puncture, which have been sent to Scotland for further analysis.

Does anyone have any ideas what his condition could be? are they doing the right tests? missed any?

Any help would be appreciated

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9 Replies

  • Posted

    I am not a doctor and I am sure your brother is receiving excellent care and his doctors should be the source of proper information.

    I am probably completely off the mark but I just wondered whether this could be Pick's disease? The only way of telling would be by brain biopsy otherwise it will be a diagnoses of exclusion. However this disease is very rare and I'm sure it won't be the problem here - I just thought I'd raise it so you could raise it with your brother's neurologist and be reassured this is not what is going on.

    Kind regards

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    • Posted

      Hi SootyWillow,

      Thanks for your reply. Some of the symptoms do seem similar (memory loss, speech) but his personality hasn't changed and it has all happened over a very short time. I will mention this to the specialists and see what they say.

      He is still undergoing tests and the Dr's are trying to do a good job, I'm just concerned that we haven't even diagnosed the issue yet never mind started treatment and his condition is deteriorating quickly.

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    • Posted

      Martin

      There are different forms of the disease and one is a language variant form of frontotemporal dementia. Here the changes in character do not materialise until later in the disease's progression. I believe urinary incontinence is also a symptom.

      I doubt this is relevant but I know how frustrating it is getting an answer from doctors and so it might just be worth mentioning this as a possibility.

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  • Posted

    Sorry to hear your brother is suffering such symptoms and so young, and your family haveing to watch him go through it.  l expect he,s under the care of a neuro surgeon, have you and your family spoke to consultant at length, l mean not just in passing on the ward, but spoke at length with him, if not ask to and voice your concerns, youve a right.

    The mrsa will be adding to his symptoms and lack of responses, and he,s not likely to improve till they get on top of that, but if he,s not in ic unit that should mean he,s not too severely affected with mrsa.  You could try symptom checker, long shot, but l know that  you must be desperate for answers and treatment to help him.l hope you get some soon, best wishes for him and family. 

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  • Posted

    Martin

    Any news on your brother? I hope they've made progress in getting to the bottom of what the problem is do they can provide some assistance in making him feel better?

    I do hope you've had some good news.

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    • Posted

      Hi sooty,

      We have had some news... not great though.

      At the minute they are still not sure what the problem is exactly. they have said currently they are testing for small tumours that wouldnt show on the scan and CJD (which has no cure). other than that they said they may need to perform a biopsy on the brain and see what that shows.

      We've been advised that current tests being performed by labs in Scotland and Oxford will take around two weeks, so we are just waiting around at the moment and hoping its something simpler / less dangerous than the options provided.

      Thanks for following up with it Sooty

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    • Posted

      Hi Martin

      I've been wondering about your brother and hoping there is some good news as he is so young and what you've described sounds heart breaking. Have the Drs figured out what's going on? I'm really hoping it can't be CJD if his personality hasn't changed.

      SW

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  • Posted

    Just a quick update, my brother is still in hospital with no diagnosis. He's had a brain biopsy and we are waiting on results. My brother has gotten considerably worse since my last post.
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    • Posted

      Thanks very much for the update.

      Really sorry to hear that there's been no positive progress and your poor brother's condition has deteriorated. I can't imagine what your brother and family are going through with this period of uncertainty. I would have thought the Drs would have come up with a diagnosis by now.

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