Friday, 6 November 2009

SO … Guillain-Barre Syndrome looks a likely candidate

Things appear to be moving at last. We had an urgent outpatient appointment with the oncologist and the neurologist yesterday evening. They concluded that it was now imperative to get OG into Addenbrookes Hospital in Cambridge early next week for sophisticated electronic testing of his central nervous system and possibly a lumbar puncture. The neurologist suspects that OG has Guillain-Barre Syndrome. His symptoms certainly point that way.

We are then left with the liver problem which the neurologist is convinced is entirely unrelated to this neurological trauma. Both he and the oncologist think this it is more likely to be connected to cancer and the liver function tests point towards there being an obstruction somewhere. The oncologist is totally distraught that he hasn’t been able to trace the cause and last night remarked to the neurologist that he had been trying to get OG a liver biopsy but the consultant concerned had refused. By the look on the neurologists' face it was clear that he doesn't hold this consultant in high esteem. They both agreed that, depending how things went, it might be best to do this biopsy while OG is at Addenbrookes.

Although OG and I dread the thought of him being in hospital again we do understand that if this proves to be the diagnosis it is a life threatening condition that needs specialist care so we have to be grown up about it. Addenbrookes is a 140 mile round trip for me each day but it is something that has to be done.

13 comments:

Maggie May said...

I know someone else who had this when she was young and she was on a life support machine for a long while and then she got over it completely and is a normal adult now. She has a scar on her throat where the breathing apparatus was put, but apart from that, you wouldn't know.

Sounds like OG is over the worst of it because he would be on a life support system if it was full fledged!

Good luck with it and the liver biopsy.
The two consultants will have to fight it out.
I am still waiting for my results to come back from histology!

Nuts in May

RNSANE said...

I am so sorry for all that you and OG are going through but thankful, indeed, that at last you are getting someone to pay attention and to look after your husband. At least with a diagnosis and the right tests, you can look for the proper treatment. Just know that we are all praying for you and offering all our support, even if it is via the internet and from different parts of the globe. Warm hugs to you and OG! Get some books on tape and good music for the long commutes!

Eddie Bluelights said...

Best wishes and good luck with the treatment for OG and for the liver biopsy as well. ~ Eddie

jay said...

I am amazed that in this day and age, two consultants can let their differences get in the way of a patient's treatment! Moreover, I'm amazed that one doc can just overrule another like that. I thought that these days we patients had a choice, so if I were you, I'd definitely push for the biopsy to be done at Addenbrookes while OG is there.

Sending you both many good wishes! When OH had to attend Addenbrookes for radiotherapy, he parked our motorhome just outside Cambridge and took the bus in. It saved him a lot of wear and tear.

The Wrenns said...

I hope this diagnosis is correct (GBS) so that finally the right treatment can commence! I'm thinking about you guys!

Retiredandcrazy said...

Yes Maggie, from what I understand it is at it's peak within 3 weeks so I think he is past the worse.

His problem is of course that he is very weak due to the cancer and he has this liver thing going on as well so he is really, really poorly.

I'm thinking of you. Good luck with your biopsy results.

Retiredandcrazy said...

Thanks for your warm hugs RNSANE. They will comfort me in the coming weeks. It's when people are so kind that I tend to give way emotionally. I can cope with the demands of the day, but a small gesture of concern leaves me in bits!

Retiredandcrazy said...

Thanks Eddie. You, more than anyone, knows what this is like. You look after yourself my friend.

Retiredandcrazy said...

I know that I run off at the lip Jay, but I wonder if there is a valid reason why the liver man doesn't want to do the biopsy. As the blood results point to it being an obstructive problem he may have deduced that a biopsy wouldn't help and would only be more trauma to put OG through Or am I just being kind to the man?

Retiredandcrazy said...

Thanks Jennifer a diagnosis would be a start anyway wouldn't it?

Sandi McBride said...

I do hope that they have finally got a handle on the situation! I know what you mean about those liver function tests...Mac is in remission from HepC and has to have them done every three months..we don't breathe a sigh of relief till they're back...all good this quarter, so Doc Moyd told us Thursday. Praying for OG...
hugs
Sandi

Sandi McBride said...

And you of course, too!!!!
hugs again,
Sandi

Mr. Nighttime said...

Oh wow...I have a friend that was just diagnosed with that 2 months ago!!!! He had immunoglobuin treatments, and has gained some strength back.