Me again. You know that I've been told I've got MS? Well, he didn't say what to do if I felt unwell. I'm feeling unwell (a little), NHS direct are not picking the phone up.

[FluffyBunnyGoneBad]

a little eye ache/blurred vision and some numbness in one leg. I don't know too much but can it wait or do I need to go to A&E for some steriods?

I don't think you will be able to rush to A&E for steroids everytime you don't feel well. I would make an apt with your GP in the morning and discuss with them.

Thanks. Just checking. It appears NHS direct is over run with swine flu!

Sorry to hear of your recent MS diagnosis.

can you speak to someone at your MS clinic?
is there a local MS group you could join, i guess there are lots of online MS forums.

I'll have a look on the web. Thanks.

Dh is in the process of being diagnosed with MS and he was told that you can only have steroids twice a year so they tend to save them for bad relapses. He seems to have the relapse/remission kind of MS so don't know if it's different with the progressive kind. At his last consulation the doctor said that it can take over a year to get over a relapse and on the occasions where the symptoms flared up it was his body still recovering rather than a new relapse. My understanding of what he was saying was that when your body is under stress the weaknesses get more pronounced. He has had a couple of incidents where his sight got fuzzy again and his left side felt weak but he wasn't given steroids. We were also told that the steroids just speed up the recovery process rather than make you get any better than you would have anyway.

Sorry if that is a bit waffly. Hope you are doing ok. For your own peace of mind it might help to call the out of hours service or NHS direct. Sending you all the best.

Thanks, that really helps. It doesn't seem as bad as how I was feeling a couple of months ago though. The neurologist didn't know alot, he was convinced it was migraines and lack of concentration. He was more shocked then me at the mess of the MRI scan so he's referring me to someone else. He didn't say what I should do if I felt unwell though. NHS are not picking the phone up at the moment.

fluffy-sorry to hear you are feeling unwell atm..and sorry about your diagnosis..I remember your thread.

Have you got some help and support at home?

Nope. I've told my sister, she doesn't quite know what it is. I tend to get on with things though. I have an exam in the morning aswell. Oh joy!

You could try calling the Multiple Sclerosis Unit at Frenchay as they are really good. They have a helpline- 0800 085 6233. Doubt they are open now but you could try.

We are lucky as we are Bristol way so were able to transfer there from the abysmal RUH. They spent 3 days telling him he had probably had a stroke before getting around to an MRI. Then they messed up the lumbar puncture. Sorry venting now! Is there a specialist place near you? Could you ask to be put under Frenchay's care?

fluffy-what's the exam in.

Shouldn't you be revising ?

Oh and I was looking at your previous thread about Uni being rubbish. MS is covered by the Disability Discrimination Act. If you go to the MS Society website they have numbers for lawyers you can talk to so that you get fair treatment at school.

Sorry to hear of your diagnosis. It's a shame they did not talk through with you more what to expect and what to do when you're feeling unwell. I agree with OJ about specific online forums, right now that might be the quickest way to get a good answer. Then see GP as soon as poss. Good luck with your exam

Ah, I'm being sent to Nottingham, there's a specialist there. The neurologist started talking about migraines, then dementia when I told him I'd forget things sometimes. He did say he'd assumed I wasn't concentrating and was wrong. Poor bloke. I hope he doesn't do the LP!!!

The exam's in the workings of an MRI scanner/ultrasound/CT machine. I've got a little bit to do when ds goes to bed (if I can see my handwriting that is).

Thankyou all

My DH was DX with MS by a neurologist in nottingham.

Did his name start with a B?

No it was an A, was at QMC

thou to be fair steve saw a few different doctors as his was a very unusal case so they used it for training purposes.

I'm being sent to someone there, I live in Derbyshire so have seen someone here. There isn't an MS nurse in Derby at the moment either.

Fluffy - sorry to hear baout the diagnosis.

Good luck with the exam.

It's important that you tell the uni about any possible impairment affecting your exam before the exam starts even if it's just in note form or in a brief call to the Disability Officer.

The DDA does not allow for the uni being 'a bit crap'.

I remember your threads, I've been on here a year and a half. How are you now?

Did they DX your MS by doing brain scans?

Thankyou Redlentil. I should have time to pop and see the lecturer tomorrow before the exam.

Steves MS was the relapsing kind, i have some of steves medical notes that said in 1990 they found white spots on his brain and they mentioned MS in the notes, steve was never told thou until he was scaned jan 07 so he did really very well.

It must be difficult for you all to have found out what was affecting him for so long.

I know I have a few lesions, he said there was one in the cerebellum. There's normally white patches in the brain anyway, they should be symetrical if they are normal. There isn't normally any in the cerebellum. They don't match with the symptoms I have either.