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Original poster

Been in hospital 2 weeks now and get my results today, so scared.

296 replies

LargeGlassofRed · 20/10/2011 04:35

have a few health threads going, it's been a long 2 weeks, I miss my kids so much it physically hurts :-(
The results from my lung biopsy come back tidal and with it a final diagnosis.
The front runner is neurosarcoidosis but the big c is yet to be ruled out.
So scared just want to press fast forward and get on with what ever it is. :-(

OP posts:
RichTeaAreCrap · 20/10/2011 19:10

Just caught up, what a horrible time you are having. I really hope they hurry up soon with your results and hope that they are good when they do come.

You must be so bored in there now. Is there anything that we could do to help if any of us are local?

Original poster
LargeGlassofRed · 20/10/2011 20:20

Ah thanks so much everyone, your kindness has made me cry :(
I m in Gloucester on a neuroward, with very restricted visiting so thanks for the visiting offers but barely fit family in.
The doctors seem to come round in the afternoon but the senior neurologist only comes round twice a week I think, the junior ones are here each day,
Might cry on one of the juniors tomorrow, they may take sympathy and chase up the results.
Most of bloods are fine I think,
So far results that have come back with anything are -
Ct and chest xray - show bilateral airspace shadowing.
MRI contrast - showed multiple white matter leisions
Lumper puncture - showed increase in lymphocytes.

Anyone want to have a stab at diagnosing me Grin

OP posts:
Original poster
LargeGlassofRed · 20/10/2011 20:22

So far they think most likely neurosarcoidis
Other possibilities from doctor google,
Cancer
Ms
Hypercondria Grin

OP posts:
GalloweesG · 20/10/2011 20:30

I had a google and the only word I could read let alone understand was neurosarcoidoisis. Not that I have a flipping clue what that is!

Bit of a bummer that on a neuro ward the head neuro only comes round twice a week. Definitely push the junior doctors for more info and results.

In the meantime I prescribe red wine, lots of it and a huge hug while no one is looking. Are you on your phone or do you have a laptop with you?

PosiesOfPoison · 20/10/2011 20:37

Does your Doctor look like <a class="break-all" href="http://www.google.co.uk/imgres?q=sexy+doctors&um=1&hl=en&sa=N&biw=1440&bih=779&tbm=isch&tbnid=MwDzIgbHtARz4M:&imgrefurl=sales.ctv.ca/sales/site/Primetime/GreysAnatomy.asp&docid=89WyJU53O881SM&imgurl=sales.ctv.ca/sales/site/Primetime/images/GreysAnatomy-web.jpg&w=250&h=300&ei=YXigTomOHoes8gP71MzrBQ&zoom=1&iact=hc&vpx=548&vpy=126&dur=4236&hovh=240&hovw=200&tx=128&ty=119&sig=106337889273525209478&page=1&tbnh=133&tbnw=111&start=0&ndsp=36&ved=1t:429,r:3,s:0" rel="nofollow" target="_blank">this

Original poster
LargeGlassofRed · 20/10/2011 20:38

Thanks gallow, on my phone, will defiantly push the junior in the morning.
Can't even have a glass of red as the pills I'm on for the vertigo say in big letters Do Not Drink Alcohol :(
But seen as they are making no difference don't know way I'm on them, might ask about that tomorrow too.

OP posts:
Original poster
LargeGlassofRed · 20/10/2011 20:48

Posies, much more like the second one, although there is a very sweet young doctor who came to take a history off me on Tuesday, and as visited me each day since :)

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herbietea · 20/10/2011 20:54

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Original poster
LargeGlassofRed · 20/10/2011 21:02

Thanks herbie, could really do with a mumsnetting neurologist :) might be a bit of a tall order though.

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herbietea · 20/10/2011 21:07

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25goingon95 · 20/10/2011 21:32

Oh no you poor thing. Hope you manage to get some rest tonight! And that you finally get some answers tomorrow!!

Hugs x

Elibean · 20/10/2011 21:36

You poor love Brew (with shot of brandy in it) and [biscuits] and Thanks

bilateral certainly doesn't sound like cancer, to my laywoman's way of thinking. Sounds far more likely to be something that affects lungs all over/on both sides, like sarcoidosis.

Not exactly a MNing neuro, but still Grin

I hope the junior doctors play ball tomorrow, this sounds ridiculously slow for you - especially as you have young children. Grrr.

WorkingItOutAsIGo · 20/10/2011 23:39

Oh you poor thing...wretched situation. Your first job is to rest and get better, so focus on that. Some of these tests do take a long time, and neurology in particular is still quite an art and a waiting game, so it is par for the course I am afraid. You've clearly got something there, and they need to work out what it is so they can get you the right treatment and then you will start to feel better. Big hugs to you and for your kids.

LittlePebble · 21/10/2011 00:06

Hey Largeglass popped back to see how your tests went, sorry you've had such a crap day, so frustrating for you to have waited all day only to be told you still have to wait. Can you organise another home visit for this weekend in the morning so you have something positive to look forward to to distract you? Hope you find some answers soon and get better and home to your family asap xx

magso · 21/10/2011 08:13

Just popping in to give you a quick cuppa!
Hope you get somewhere today. I suppose no news yesturday although frustrating probably rules out some more obvious things. It is pants when the topman is only there 2 days a week - the juniors are not always willing to say much. Have they changed your therapy?
Hope you get news soon and get out for the weekend at least oh and start to feel better!

Original poster
LargeGlassofRed · 21/10/2011 08:37

Thanks all, feel a bit better today as actually got some sleep last night.
The sister said I can go on home leave for the weekend ! Yippee also taken iv out of my arm, yippee 2.
Have to inject myself once a day, and promise to come back if start feeling rougher but otherwise I'm free for a bit.

OP posts:
ednurse · 21/10/2011 08:43

Hope you get your results soon!

WorkingItOutAsIGo · 21/10/2011 09:21

That is good news, have a lovely weekend! Brave you injecting yourself though - am impressed!

GalloweesG · 21/10/2011 14:13

Great news, enjoy your weekend but try not to over do it.

essexgirl31 · 21/10/2011 14:44

Enjoy being with your DCs this weekend. They will love having their mum home for a bit.

Thinking of you

Elibean · 21/10/2011 17:22

Good Smile

I don't think they would let you out unless they a) thought you were ok to go home and b) trusted you to come back if you're not ok, so...have a lovely time! Coming out of hospital is ALWAYS exhausting, even if you're pretty much recovered, so yes, do take it easy. Lots of little interractions, and then lots of little naps/rests. Stay on sofa/in bed and let them potter in and out, maybe.

Enjoy!

Friendlymum67 · 21/10/2011 17:42

Hi LargeGlass, do hope you get the results soon, I can imagine what the waiting is like. Have posted once before re your symptoms. Unfortunately I am not a neurologist [hgrin] but my dad had sarcoidosis (lungs) for 25 years. I was quite young when he was initially diagnosed but his symptoms were very similar to yours - esp the weight loss - but once the diagnosis was confirmed, he managed quite well on steriods. He did have the odd blip and could get quite tired some days but anyone looking at him wouldn't have known he was unwell. Not sure if this helps but I felt for you and wanted to try and put your mind at rest.

Grockle · 21/10/2011 19:47

Have a lovely weekend, LG

RichTeaAreCrap · 21/10/2011 21:35

So glad you are able to go home for the weekend LargeGlass, I hope you have a lovely time with your dc's.