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Moose here - again. Following on from my epilepsy thread.

638 replies

moosemama · 14/03/2013 16:45

Hi folks, we were up to 995 posts, so I thought I'd better start a new thread

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LeonieDelt · 08/04/2013 20:31

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CouthySaysEatChoccyEggs · 11/04/2013 13:11

I've got my letter from the Gynae consultant.

This is the letter :

Dear Couthy

Thank you for your letter of 21st March. I can confirm that shortly after you had your colposcopy with me on Tuesday 26th February that you were then found shortly afterwards in the waiting room surrounded by a number of staff, watching you have a convulsion. The convulsions lasted for a couple of minutes each time and from what I witnessed, this happened at least 3-4 times. I did not see that you but your tongue or wet yourself but you certainly underwent a tonic clonic convulsion with periods of absence and this may amount to an atypical grand mal or more severe petit mal seizure.

I have copied this in to Dr Disbelief (changed name Grin ) at your surgery so they are aware. If you need any further information please do not hesitate to contact me.

Yours sincerely,

Mr Head Honcho,
Consultant obstetrician & gynaecologist

CC : Dr Disbelief at your GP surgery...

CouthySaysEatChoccyEggs · 11/04/2013 13:12

Do you think this might show DLA that I am having seizures...

WinkGrin

LeonieDelt · 11/04/2013 17:17

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LeonieDelt · 11/04/2013 19:53

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CouthySaysEatChoccyEggs · 11/04/2013 20:23

Wish I knew - night work out WTF is my issue with meds too, if I knew! Grin

I feel like a weight has been lifted off me with that letter - a proper medical consultant type person has STATED IN WRITING that in having seizures.

I'm not totally mental...only some...Wink

The Neuro I see seems to be quite aware of epilepsy - holds talks etc, is on the board of the Associated Board of Neurologists. Only thing I can't seem to find out online is her Neurology specialism.

I'm really hoping that a) she can see from this letter & the witness statements that it IS epilepsy, and b) She finds me a med that works, without (really) nasty side effects.

God knows what they will try.

Good thing though - Neuro is female, so hopefully will understand about the hormonal component catamenial epilepsy there is to my seizures.

I will arm myself with a list of drugs I've tried, my reactions to them, if they helped or not, if I was allergic to them etc...

Plus my own account of my seizures, plus the Gynae consultants letter AND the witness statements that I now have.

Tbh, the DLA is now almost a side effect to getting a firm dx, and proving that I've not got NEAD, but 'proper' epilepsy.

I will be sorting out all my DLA appeal paperwork tonight, though, and sending what I do have off to them, signed for.

After that, I've done what I can!

CouthySaysEatChoccyEggs · 11/04/2013 20:25

Oh - and I just wish I had been a fly on the wall when my GP received his copy of this letter, couriered to him...GrinGrinGrin

LeonieDelt · 11/04/2013 20:26

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CouthySaysEatChoccyEggs · 11/04/2013 23:44

I'm not seeing the Neuro till June, and I'm already in a pickle about WTF she will want to stick me on.

I will be refusing Epilim, Tegretol and Topamax, so she'll have her work cut out for her...Grin

LeonieDelt · 12/04/2013 13:49

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CouthySaysEatChoccyEggs · 12/04/2013 14:07

You too! What is Gilbert's?

CouthySaysEatChoccyEggs · 12/04/2013 14:08

I would like a thyroid test, have been asking for one for years.

LeonieDelt · 12/04/2013 14:11

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LeonieDelt · 13/04/2013 21:38

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LeonieDelt · 14/04/2013 18:38

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moosemama · 15/04/2013 11:11

Sorry I've been awol again. Things are very tough in rl at the moment.

Just wanted to pop in and say good luck for your appointment today Leonie. Hope it goes well.

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LeonieDelt · 15/04/2013 12:27

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CouthySaysEatChoccyEggs · 15/04/2013 14:41

Still reading - tough hols for me too, SW thing DIDN'T go well. Will explain on my other thread later.

LeonieDelt · 15/04/2013 16:40

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LeonieDelt · 16/04/2013 10:24

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LeonieDelt · 16/04/2013 17:25

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LeonieDelt · 17/04/2013 20:20

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CouthySaysEatChoccyEggs · 17/04/2013 22:06

I really don't know, Leonie. Sad

Give the topa another go on the slower schedule? Find another Neuro?

Wish I had these answers for you, I really do!

LeonieDelt · 18/04/2013 16:30

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moosemama · 19/04/2013 16:12

Leonie, I haven't a clue what to suggest.

Can you ask for a very slow start at a lower dose, like Couthy suggested?

I have just received a letter from the locum neuro. My eeg has been cancelled, as apparently I do not fulfil the criteria. I could have told him that, I have sporadic/irregular, unpredictable episodes, which are more prevalent around a week before my unpredictable and irregular period. Hmm

It says 'the patient will be reviewed in the clinic to review her clinical history and arrange further management plan".

So, we're back to square one and he will probably just stick me back on a 12 month review or discharge, like he wanted to at the last appointment. Hmm The only other avenue they have left is a sleep deprived EEG, which would be more appropriate, but still stands a chance of not catching anything.

Stupid thing is, I only got the letter confirming my EEG at the start of this week.

I'm wondering if he has been over-ruled by someone senior or if it was because he asked when I have most of my seizures and I told him they always happen between 4.00 am and 6.00 am.

I have had lots of episodes this week, kicked off by a god awful migraine last Friday, that ended up with dh having to come home from work to have the dcs. I am premenstrual again though, so it is seeming like there is almost definitely a link there.

Only problem is that I have been so rough and so busy simultaneously that I haven't managed to keep a proper record of what's gone on over the past week.

Dog is still hanging in there, but it's very stressful keeping her safe and comfortable. Saw a different vet last week and he really messed with our heads suggesting it wasn't osteosarcoma but could be a bone infection, curable by amputation (at a cost of £500 plus pre-op xrays and tests that would cost about £200 and may mean the op wouldn't go ahead). Seeing the original vet again on Monday evening. I'm pretty sure she has lung mets as she's coughing, her breathing isn't right and we keep finding blobs of blood here and there that we can't trace a source for - so probably as a result of coughing. Still haven't a clue what to do though, because despite it all she still wants to play with her toy and is happy and pretty much herself and comfortable on her pain meds.

Ds2 went on his first ever residential trip today - after being up in the night sobbing and saying he didn't want to go. Sad He went off on the coach happy enough, but ds1 spent the whole day sobbing about it and unfortunately was able to watch the coach leave from the playground at lunchtime. He came out of school sobbing just can't handle ds2 not being here.

Not looking forward to this weekend, ds1 and dd fight at the best of times, but have been much worse recently. Ds2 is usually my little peacemaker and absolutely golden with dd, so it's going to be a looong weekend without him. Sad

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