Here some suggested organisations that offer expert advice on SN.

You know sometimes life tests you just that little bit too much :(

(34 Posts)
coff33pot Thu 07-Feb-13 11:09:53

Now my lovely brother has lost his sight. Just drove him for an emergency MRI which they should have done last week when he went there blind in one eye. Now its both.

And people go on about there is a god..............right of course there is well he sure aint looking after me or my family sad

{{{massive hugs}}}

Do they know what's causing it? Is there a chance it's temporary?

Your poor brother, he must be so scared sad

hazeyjane Thu 07-Feb-13 11:12:48

Oh coff, there are no words. Thinking of you and your family. x

Oh coff I don't know. I'm so sorry.

Just in case there IS a God, I'll pray for your family whilst you aren't able to.

I hope that they discover something that can help him/reverse the problem etc.

I think Lougle knows a little bit about these things btw.

autumnsmum Thu 07-Feb-13 11:17:31

That's awful so sorry to hear it

DameMargotFountain Thu 07-Feb-13 11:18:19

oh coff - i wish i was closer {{{hugs}}}

willing that's it temporary for your brother - thinking of you all x

TheNinjaGooseIsOnAMission Thu 07-Feb-13 11:20:10

sorry to hear that coffee, hugs to you all

ouryve Thu 07-Feb-13 11:21:15

Awww {{{hugs}}}

I hope it's something easily fixable. How awful for him sad

chocjunkie Thu 07-Feb-13 11:35:16

oh coff, so sorry to hear this.

hopefully it is only temporary (happened once to a colleague of mine). x

silverfrog Thu 07-Feb-13 11:40:35

I'm so sorry, coff33.

Thinking of you and your brother

coff33pot Thu 07-Feb-13 11:55:27

Thank you guys I am sorry about outburst its rather unfair to believers and I am sorry if I have offended anyone not my intention. I am just having a mad at the world at the moment and sometimes things get the better of me and when it comes to my family I lose it x

He has Dystonia and OCD although I am not so sure its not MS linked to be honest.

He had mri a long time ago and there was a small mass on his brain then and one side of brain was slightly larger (cant remember what) but they said they knew nothing about it, couldnt say if it would grow, what it was and if it would affect him so he sort of got on with it.

He had pains in his eye and thought it eye strain but now vision went and he only sees grey mass and the odd flashing blue spots which has now turned into black spots. Eyes dilating and open though. He fell down stairs beginning of week thought he was at bottom but he had only gone down 3 steps sad

Now his other eye has pain and the vision is fading fast. I guess I am scared for him as he is being the big "I am alright" brother. His OCD is causing more stress and stress is the last thing you need for dystonia as the attacks come faster.

Its a wait and see and I am a horrible impatient woman. Specialist is furious he didnt have emergency scan first time round and they sent him home to rest saying it may come back.

The clock is ticking and I am going to rip the bloody think off the wall lol

Where are you now?

troutsprout Thu 07-Feb-13 12:56:32

Flipping ell
sad

zzzzz Thu 07-Feb-13 13:03:05

Oh coffee how exhausting and awful for you all and how truly terrifying for db.

I'm so sorry this has happened to you all. Make sure you are all eating and take him piles of snacks, he will be so bored and tired of it all.

PolterGoose Thu 07-Feb-13 13:03:39

So sorry coff, you've had so much to contend with, it just isn't fair sad

Honks and ((hugs)) and thanks

starfishmummy Thu 07-Feb-13 13:06:27

((hugs))

inappropriatelyemployed Thu 07-Feb-13 13:07:50

I am sorry coff that is so horrible for your poor brother and for you and your family.

I hope you get some positive news on prognosis.

Take care XXX

FreshWest Thu 07-Feb-13 13:14:26

Hi coff, I'm frequently amazed by a lot of your posts which show that in spite of what life throws at you, you keep on fighting. Faced with what you have had to contend with I'm sure I would have collapsed into a heap a long time ago.

Not sure if I have understood correctly but does your db have ms? If so then I'd like to add that it was problems with my eyesight (optic neuritis) that led to me getting a dx. My eyesight deteriorated badly in my left eye and I was so distraught and could only think I would never see dd get married ( confused big picture eh?). The MRI showed my brain had a patchwork of 'scarring'.
My eyesight has now come back properly and I only ever notice it as a slight strain if I'm having an ms related issue.

Just to say, keep strong and ((hugs))

SallyBear Thu 07-Feb-13 13:16:01

I am so sorry to hear this Coff33. hmm

I doubt you've upset any believers coff. I doubt many believers here can honestly say they haven't felt the same at times anyway, you know, when the shit just keeps on coming, and then some.

Prayers/thoughts/well-wishes/honks, they're kind of the same in my book anyhow.

So if you prefer, you have my honks!! HONK!

coff33pot Thu 07-Feb-13 14:41:17

Thanks a lot for the prayers honks and thoughts smile

Just got back home still a bit confused tbh. Scan showed optic nerves are very enlarged and swollen. Right eye not as bad and the specialist put it down to eye strain now its compensating for two. But the pain he is in after diazapam AND zapain (sp) and ibruprofen is odd as you would think that would numb and elephant!

Specialist cannot see anything else causing it but scan been referred to neurologist now as they feel its to do with dystonia although to be honest not enough is really known about dystonia and about all it can affect.

Reason why I mentioned MS is they did not actually know what was wrong with him for years and Dystonia can cause eye problems yes but usually because a dystonic attack causes the lids to force themselves shut not actually cause blindness. Yes I know googling does you no favors. And he has had more relapses and attacks lately and is deteriorating quicker. Its just that "niggle" iykwim.

This person has said possibly his sight may return in about 6 weeks unless there is something else the neurologist spots as she said the scan and reading it is not her field (FFS! emergency scan and the fucking woman cant read it!!!) And she cant tell him WHY its swollen like it is confused

Fortunately his ankle that we thought he broke he dislocated and put it back at the same time by landing on it ouch! although he doesnt bruise he is purple now.

Fingers crossed it sorts itself out and I hope he gets a phone call pretty quick. I would assume he would if it was serious (well it is to me) but then they made DD wait weeks before they confirmed her cyst on the brain.

coffee and chocolate in order I think x

Inaflap Thu 07-Feb-13 15:13:21

Honk honk.

Ineedmorepatience Thu 07-Feb-13 17:13:38

What a nightmare coff sad, am honking for you.

shazian Thu 07-Feb-13 17:41:03

(((hugs))) Coff to you & big bro. Hope it is temporary and that he gets a call soon xx

NoHaudinMaWheest Thu 07-Feb-13 17:49:27

Oh Coff I'm so sorry this has happened. I do hope it resolves and hugs honks whatever helps keep your strength up.

Although I'm a Christian (just about) I was offended by your first post. In fact shouted something very similar at God myself yesterday.

Pebbles69 Thu 07-Feb-13 19:37:20

Thinking of you and your brother. I hope that you get some answers very soon and that your brother gets his sight back.

frizzcat Thu 07-Feb-13 21:54:06

As someone said up thread believers would never take offence to anything like that - we all ask those questions.
Who is supporting your brother other than you, and I know you're glad to do the fighting coff - but seriously you have a lot on your plate. Who's around that can ride pillion with you?
Hope your db gets what he needs and gets on the mend soon - lucky for him he has a sister who'll drag him and the medical profession (kicking and screaming) to that end point.
Much honks, love, hugs and a word with God to get it together wink

EllenJaneisstillnotmyname Thu 07-Feb-13 22:04:01

Your poor brother, coff. sad Your life has been so difficult lately, you would feel like fate or whatever has got it in for you. Really hope it turns out to be something temporary. Is your brother married? You can't do all this on your own, you need some RL support. Many hugs and honks. Xxx

bialystockandbloom Thu 07-Feb-13 22:06:46

Aw coff only just seen this. How rotten for you all sad

Thinking of you and your brother, hoping you get some positive news soon x

crazygal Thu 07-Feb-13 22:14:10

sorry to hear that sad
{{hugs}}

coff33pot Thu 07-Feb-13 23:10:03

thank you again very much smile

Yes he is married to a wonderful person and its hard for her too, but she is great and very supportive of him could not wish for a better SIL to look after my bro smile

She cannot drive though hence why I was called as he wont ask for help from anyone unless desperate he is such an independent stubborn so and so! (wonder where little bro gets that from grin.

I guess I should sit back and let (HOPE) the medics know what they are doing. Unfortunately due to past and present experiences I tend to cut to the chase now and fight instead of pussyfooting around anymore grin

frizzcat Thu 07-Feb-13 23:17:16

grin grin grin - sorry laughing at two things the genetic stubbornness and you sitting back and hoping ....interested in how that goes for you??
Glad you have a great SIL

EllenJaneisstillnotmyname Fri 08-Feb-13 00:37:55

Listen to me, 'married!' Like I'm from the 1950s! Glad he's got someone else also fighting his corner and you can share the worry a bit. smile

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