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I want someone to tell me what to do - I have too many options

111 replies

Katymac · 22/03/2010 14:52

I am feeling very out of control & unsure about what to do with regard to DD not being able to see (which might or might not be psychological). Should I:

a) See GP about DD' sight & ask for:
i) a referral or a second opinion (who - Big local hospital or Moorfields)?
ii) a referral to an OT?
iii) something else?
b) wait until mid April & see current hospital again?
c) Speak to the CAMHS person to see what they think?
d) something else

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Katymac · 23/03/2010 21:53

I've CAT'ed you Pixie

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PixieOnaLeaf · 23/03/2010 22:26

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Katymac · 24/03/2010 07:57

They can take a while - MN monitor them so there is no threatening/bullying behaviour

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ilove · 24/03/2010 08:18

Katy

I have had Optic Neuritis three times.

I'm going to be blunt below so if you aren't up to reading it at the moment then skip it.

My pain and visual disturbances started on honeymoon in August 2000.

Went to GP in September who faffed with oral antibiotics., then eventually an optician who sent me urgently back to the GP for a referral to a neurologist as he could see a problem with my optic nerve.

I had to go in and sit in the ward waiting room, the second someone was discharged I was given their bed and the tests started.

I had an MRI, eye tests, balance, field test and they were about to do a lumbar puncture when they came running in with the results of the MRI and my optic nerve was inflamed to the point of looking like a ribbon threaded through my brain (it should look like a strand of cotton).

Immediately they set up an IV drip of VERY high dose steroids (a gram a day for three days given exactly 24 hours apart). This is the ONLY steroid treatment that works on Optic Neuritis as it penetrates the lining of the brain, Oral steroids will do NOTHING for visual problems. The side effects of the steroids were rank but the pain subsided and the vision in that eye improved slightly.

I am left with permanent damage to that eye as the myolin sheath around the nerve is damaged and cannot repair itself. I have no colour vision in my right eye and no peripheral vision.

They repeated the MRI three months later as often Optic Neuritis is the first sign for MS.

You MUST get your DD referred urgently to a NEurologist, there are other things could be causing it...in my case, I had ON a further twice and it was found to be a side effect of pregnancy, which can also happen. I had the steroid treatment as an outpatient, going home with the canula in my hand then back 24 hours later for the next dose.

Please, get a referral. Shout and scream if you need to - A&E were useless for me even when my husband refused to take me home until they had done something about the pain I was in - it was like having an arrow from my eyeball right through the back of my head in a line.

I get pain still now, not often, but if I have been mumsnetting working too much on the PC.

Like I said, I know the thought of MS can be frightening but I haven't seen anyone else mention it and thought you should perhaps hear from someone who has had ON and come out the other side. One thing that DID help with the pain was acupuncture if you have a recommended place near you - I went to one in York who were excellent.

Katymac · 24/03/2010 09:13

I really appreciate you being brave enough to post ilove, it must have been hard.

I won't be giving up - I really won't but I do take comfort in the fact she has no pain

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PixieOnaLeaf · 24/03/2010 09:38

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PixieOnaLeaf · 24/03/2010 09:39

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tatt · 24/03/2010 09:48

so she hasn't had all the tests Moorfields might do. They are the best place in the country to go if your child has a sight problem. Tbh I'd pay to go there if the gp didn't refer me.

You'd feel so much better about this if you went. There would be no niggling doubt, you'd have been to the best in this country and one of the best places in the owrld.

Buda · 24/03/2010 09:50

I would be demanding a referral to Moorfields Katymac. Your GP must understand that you are terrified of what all this means and until you know that every test that needs doing is carried out then you cannot accept that it is psychological.

A much more minor issue but a few years ago I was home in Dublin and was getting sudden onset pains in one side of my head so i went to a GP. He said and I quote "I know you think you have a brain tumour because that is what anyone would think. I can refer you for a scan today and if you have health insurance you can have it done tomorrow. I know you don't have a tumour but that your headaches are tension related but if you want to have a scan to reassure you then that is what we will do."

Just hearing that I could have a scan helped. I decided to leave it a few days and see what happened with the headaches. And they went away.

ArcticFox · 24/03/2010 09:59

Hi Katymac

As an ex Moorfields patient, I would agree that they are the best place to go, although you would need a referral. There are however, other specialist eye hospitals - eg Wolverhampton, which are also excellent.

I had a total shocker about 10 years ago, when I got an eye infection in Australia- pharmacist and GP both diagnosed conjunctivitis (not really their fault- it's what it looked like). After 3 days, the pain was so bad I went to the GP again (yeah I know i shouldnt have left it but i just thought i was overreacting), who referred me to a specialist, who took one look and sent me to Sydney Eye Hospital (Moorfields equiv). I was hospitalised for a week and ended up having a corneal graft which fortunately was successful.

I'm not sure who you've seen already but I guess my point is that a GP/ high street optician/ general A&E doctor, whilst they do their best, might miss what a consultant opthamologist wouldnt, so dont feel embarassed about demanding a referral to a specialist.

PixieOnaLeaf · 24/03/2010 11:24

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Katymac · 24/03/2010 19:23

OK I stuffed up tonight

DH & I went to the vet, leaving DD & a friend at home (we were delayed)

The friend's mum picked her up 45 min later & we weren't home

She couldn't phone us & got scared - luckily I phoned to say we were on the way home & we chatted until we got home

She sounded really scared

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stleger · 24/03/2010 20:15

When does your dd get off for Easter? She'll be glad of the break. I am convinced a good vet is better than most gp's for a bit of advice!

Katymac · 24/03/2010 20:39

That's what I've been doing wrong......I should have taken her to the vet

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stleger · 24/03/2010 22:27

Katymac, have you read the saga of the pouffe in mumsnet classics ( a modern classic, beginning yesterday). It will divert you. Good luck with your next step, whatever you decide.

Katymac · 24/03/2010 22:30

Yes............Thanks

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Katymac · 25/03/2010 14:41

I can't get to see the GP until next Thursday.......so I'm stuffed

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Katymac · 25/03/2010 20:36

Massively massively impressed with the sensory support team

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cory · 25/03/2010 22:27

Katymac Tue 23-Mar-10 14:02:58
"What he said was that "the results from the tests she had had preclude it being anything other than a conversion disorder" but I wasn't in much of a state to ask for anything more"

Which is exactly what the paediatric consultant said to me re dd's joint pains. 7 years later, not only is dd recognised to have a entirely physical joint condition, but her little brother has been diagnosed with the same thing, because the bloody thing is genetic and the signs were there all the time for everybody to see

Katymac · 25/03/2010 22:33

Oh Cory - that is so unfair

But Dr's make mistakes, they miss things, they read results wrong and I know that because it has happened to me, DH, my mum & my dad

So I can't risk it for DD (even if I end up looking silly)

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chipmonkey · 25/03/2010 23:48

stleger, that optician that saved that woman's life was one of my classmates!

Katymac · 26/03/2010 11:39

I spoke to the GP (the one I like)

He says because of Easter her couldn't get me a sooner appointment with the consultant than the appointment we have on the 12th

He says that whether I go to the small local or larger hospital I would see the same consultant

That the local consultant is as good as Moorfields & that the GP knows him really well

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tatt · 26/03/2010 14:17

with all due respect to your gp they may be allowing a personal friendship to unduly influence them.

However good a consultant the person is at the local hospital they don't have the same range of experience you meet in a tertiary referral centre. But you can always ask the consultant to refer you on if they say conversion disorder.

stleger · 26/03/2010 15:59

(That story was amazing chipmonkey. I hate the thing that opticians puff in your eye, but now I appreciate what they do!) Can a gp refer direct to Moorfields?

Katymac · 26/03/2010 19:58

Bump for Pixie

She had another really bad day - I think her friends are fed up of leading her around

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