so relieved to know that everything's going on smoothly, though slowly, with you and your brother and his family..we all hope for his fast recovery..and we hope whatever happens, it's all for the better..just keep the faith and eventually it'll all be alright.
Hi Rosie,
I am so pleased he is now in the UK.
Well done with your hard work to acheve this.
Mick.
That's fantastic news, very best wishes to your brother, his family and of course yourself
great news rosie it must be such a relief to have your brother back here in the uk my thoughts are with you & your brother at this difficult time
And mine, Rosie.Originally Posted by stevie c
[figuratively speaking]
It's nearly 7 weeks since you started this thread Rosie and we're all relieved to have your update.
ADEM (acute disseminated encephalomyelitis) is understandably not a condition most people will have heard about, and so it's some consolation to you that the diagnosis has been confirmed here. It must have been an additional worry to you that the diagnosis might have been incorrect after all this time. It may still be the case that the biopsy slide will be referred to a neuropathologist in the UK.
The name may be like a foreign language, but in truth it's straightforward:
acute = rapid onset
disseminated = widespread
encephalomyelitis = inflammation of brain and spinal cord
The reason it may follow a viral infection ? - the body confuses a virus with a nervous system protein (myelin) and mounts a response to it which is auto-immune = against self.
I'm sure that's been explained to you Rosie, but hopefully this is of some help to all members who have sympathised with you and your brother. Far better to know that the correct diagnosis of such a rare condition was made, than still be left wondering after all this time, even if as you say it's still a "long haul".
Best wishes to your brother and yourself Rosie.
He'll be in good hands now.
You're a veritable 'Tower of Strength', too, Alan ... not only to Rosie, but to each and every one of us on this site ... and it's an honour and privilege to have someone of your calibre within our circle. A heartfelt
rosie
So happy to finally hear the good news.
Your brother and his family are now here in UK.
Yours is a story that although not directly ours, fills up so many spaces in our lives.
One thing you now know is that through hope, strength and determination no situation is permanent.
All you have to do is think back on recent weeks to the highs and lows that you have been through already.
I am sure there were times when it seemed like there was no way out of them.
But here you are a few weeks later, having gone through some really difficult times and having scored victories over them.
From what you have said it sound like your brother has made further significant progress.
Our words of encouragement and strength to you and your family today, are that even the difficulties you are all facing now will pass.
Seems the medical staff in Philippines also did a fine job. Well done to them!
God Bless all
Doc Alan, thanks for the advice ...... I had asked for the biopsy slide to be brought to the UK with my brother before he left but found out that it's not hospital practise to do so. However, they promised to make a "copy" which is being couriered to me so that I can take it to the hospital. I don't understand how a copy would work but I hope that it is of some use. Just before he left, the diagnosis in Philippines was changed to Multiple Sclerosis but the UK consultant has disagreed with that yesterday which is a huge relief ....... I have to say that the Filipino neurological consultant was very professional, supportive and caring and was able to stablise my brother but even he said that he would be better off in the UK and helped us to get him there too.
Thank you so much to each and every one who has posted a reply, I am VERY grateful to you all, it's such a good feeling to have some very valued support.
By the way, I had a nice chat with my brother's new nurse today, and guess what? ........... she is Filipina !!!
You're a veritable 'Tower of Strength', too, Alan ... not only to Rosie, but to each and every one of us on this site ... and it's an honour and privilege to have someone of your calibre within our circle. A heartfelt
i second that
A "copy" WILL be of use. They will either send the tissue "block" (suitably processed so very thin sections can be prepared for microscopy), and / or tissue sections already prepared, on glass microscope slides. Either way the sections which will be seen here in the UK will be virtually identical to the originals because they are taken from the adjacent tissue (within a fraction of a millimetre).
(As for the suggestion of multiple sclerosis ( MS), I can understand why they considered that, as it's in the same group of conditions as ADEM, but you've been reassured by the UK specialists that they don't think it is MS).
I'm glad to have helped in addition to the great support given by other members
Hi Rosie
I've not posted on this thread before, as I didn't think I had anything constructive to say...but it dosen't mean I haven't been following it.
Really pleased to hear that your brother & his family are finally here in the UK...All down to your persistance.
Thank you so much for the additonal information Doc Alan ........... I now understand how the "copy" works. Your advice has been invaluable, I am very grateful.
Sim - I know from the number of views on this thread that a lot of people have taken an interest in what has been happening and I thank you for your kind words and interest too. Bless you all.
My brother was transported back to the UK on a commercial flight strapped on top of 9 seats. He was sedated and understandably looked terrible when he arrived as besides being very uncomfortable he was very dehydrated too. After 3 days of being in the UK, he is now stable, his eyes are now clear, he is eating a little, he is trying to hold a conversation (although he forgets mid sentance what he is trying to say) and he can now suck through a straw. His eyes light up when someone mentions a cup of tea and he remembered that he takes 2 sugarsAll positive and encouraging stuff!
My brother's illness came out of the blue and I am so thankful that it happened in the Philippines and not India where he is thought to have picked up the original virus. It's been a harrowing and very costly ordeal, emotionally as well as financially but we are getting there and on the road to recovery.
Once again, thank you so much to everyone for your support, you are a great bunch of people and I am so pleased to be a part of such a lovely community!
I noticed Rosie had deleted a very recent post on her brother, maybe for understandable personal reasons. I'm sure all members who have followed the thread will be thinking about you and your brother, Rosie, as Christmas approaches, and respect your privacy.
Thank you for your concern Doc Alan .............. after nearly 4 months, my brother is still in hospital and is seriously brain damaged. He is currently being assessed for continued care in a nursing home which is hard to accept since he is still in his 40's but I am grateful for any help that can be given..
I have to remain optimistic that one day, he may eventually emerge from this nightmare and be suffficiently recovered to resume his life once more. In the meantime, I will continue to be there for him every step of the way.
Well done Rosie...You did a good job helping your brother...I've been reading your post since it was started....I know how you feel coz my son was very poorly a few weeks ago and its not very nice seeing our love once in the hospital very poorly....Just keep on praying and God will always there to help us....Wish for his fast recovery....
I had been following your thread Rosie and am full of admiration for your efforts to repatriate your brother and ensure his treatment, and I just assumed he was in safe hands and making improvements.
Your latest post though has struck a chord as 2 weeks ago my ex wife was rushed to hospital with what they thought was a stroke and immediately transferred to the Royal London stroke unit. She had been ill with flue like symptoms for a week or so. I accompanied our daughter to be with her and I can only describe her condition as being in a coma with her eyes open. They gave her a number of cat scans that were negative and were treating her with aspirin.Over a number of days she was deteriorating and they then decided to give her anti biotics and there was a very slight improvement.She was then able to start to recognise us and be more responsive.
Then she was given a MRI during which she had a convulsion, she has never had a history of that before. So they only managed 60% of the MRI but they began to change their diagnosis. They ruled out a stroke but ruled in Meninggitus or encephalomyelitis and following a lumber puncture yesterday they are going for encephalomyelitis but they wont be able to confirm it for some days. She is improving but has lost her short term memory , and has regained control of body functions. We can only hope she carries on improving and I hope you will see some improvement in your brothers condition.
I hope she continues to recover Pete.
Mick.
I would mind you back Doc Alan. I may be wrong here but, Arthur Little could be 'grooming' you. I was nearly sick reading what he said about you. You have been warned. Joking!
I think you were one of the first members to welcome me when I was an innocent newbie and I don't forget friends
However, it's Rosie who is the tower of strength for her brother - and a caring member of the forum too
Rosie, I'm glad that your brother is back in the Uk, and thats a testiment to your strong and persistant attidude in helping him. I hope you continue posting on the forum, and we'll all be interested in your brothers ongoing progress. I wish him all the best, and you and your family the best Christmas in the cirumstances.
Your brother is regularly in our prayers.
Thanks for your wishes Mick, bit of a relapse yesterday as she is suffering from severe hallucinations due to the medication. The patient should be drinking lots of liquids but she is severely dehydrated and left off an intravenous drip for a day.She wont drink in the hospital as she thinks they are trying to poison her.Something different every day.
Thank you so much for your kind comments Doc Alan, Jane, Pete and Ricky. My brother is due to be moved to a nursing home towards the end of next week which thankfully has a younger persons unit. I am hoping that this move will bring some noticeable improvements in the future since the care home will have far more time to spend with him than the already stretched nursing staff at the hospital.
Pete ....... I am so sorry to hear about your poor wife and wonder how she is now? What a coincidence that she could have something similar to my brother (which is quite a rare condition) and I am so relieved to hear that she is in the UK, being treated and already showing signs of improvement. Speed of diagnosis and treatment is of the essence and unfortunately, my brother was very unlucky in that respect, especially when it was established that he was getting worse instead of better.
I can certainly empathise with how you and your family must be feeling and hope that your wife has continued to improve since you last posted. It's interesting to hear that your wife will not drink because she thinks that she will be harmed........... my brother cannot bear to be touched as he thinks that further pain will be inflicted.
My thoughts and prayers are with you both for a full and speedy recovery.
Pete and Rosie..So sorry to hear of your continuing dilemmas..I feel for you both,
We have also had some dramatic turn of events with my sister in law after she experienced convulsions just after eating her lunch..(eating seems to be a trigger??)
She went for an MRI scan and they reckon there are two tumours in her head..
She`s with us now and seems to be able to walk around reasonably well (albeit slowly)..Her speech is OK now..It is a nerve racking time as we never really know what the specialists are going to say next..Time will tell I guess..
Wish you both all the very best..
Regards Fred.
I've refrained from commenting on this thread, either about Pete's ex-wife or now Fred's sister-in-law, partly because I haven't been asked, but also because their conditions are only related in the sense that they are affecting the nervous system.
Encephalomyelitis is a general term meaning inflammation of brain and spinal cord. In the case of Rosie's brother this was ADEM (which I have already described).
The specific diagnosis in Pete's ex-wife, from what you have said here, is not yet established.
With Fred's sister-in-law, you appear to be describing brain tumours which may arise in the brain (the outlook depending on the type of tumour), but far more commonly spread from elsewhere in the body (lung, breast or other sites).
Obviously I sympathise also with Pete and Fred, I'm sure in common with every member reading these posts, but it's quite impossible to say just how serious their conditions are.
Had a bit of a disappointment today as the staff in the nursing home have flu and are therefore unable to come and assess my brother on their suitability of the nursing care that he needs. This will undoubtedly put back his transfer to next week but I'd sooner that than him catching flu
Much to my amazement and totally unprompted, two days ago he remembered that he smoked and wanted to go outside for a cigarette. He's still bed-bound after 4 months so it's out of the question at the moment and not something that I would like to encourage but he's clearly going to be determined as he remembered again tonight ............ another encouraging sign.
Fred ....... I am very sorry to hear about your sister-in-law's condition and I hope that she is able to make a fast recovery.
He's on the mend !Had a bit of a disappointment today as the staff in the nursing home have flu and are therefore unable to come and assess my brother on their suitability of the nursing care that he needs. This will undoubtedly put back his transfer to next week but I'd sooner that than him catching flu
Much to my amazement and totally unprompted, two days ago he remembered that he smoked and wanted to go outside for a cigarette
Fred ....... I am very sorry to hear about your sister-in-law's condition and I hope that she is able to make a fast recovery.
Rosie and Fred im sure i speak for everyone here,, 2011 is a whole new year, life has a way of changing so fast and full of suprises. lets hope 2011 is your miracle year...
as for the cigarette, how about buying him some of those indoor smokeless ones?
Hi Rosie, it might be a glimmer of hope for your brother to start to regain his past memory,smoking,some more memories may pop up.
Dee and myself have just come back from a week in Bangkok during which we suffered with viruses all through the week but I wont bore you with them.
My daughter updated us on her mother (my ex) and the Royal London still unable to say what her illness is. Over the last week she has had 2 MRI scans that have been clear and repeated the lumber puncture.The first they used to try to confirm the suspected, encephalomyelitis but it turned out that this was not the virus. We will know the result in the next few weeks.
She is recovering but they wont discharge her until they know the results and the social services can arrange assistance as she has failed various assessments.She failed a kitchen assessment and wont be allowed to go out on her own, and will need constant supervision and home help. They seem to think that will not improve any time soon.
Such a change for someone who 3 weeks ago was highly regarded for her cooking skills and earned her living catering at private dinner functions.
Our thoughts are also with you Fred and wish your sister-in-law all the best towards a speedy recovery.
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