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Saw consultant on 2nd October

As the heading says I saw my consultant on 2nd October which basically was a waste of time. Hadn’t had lumbar puncture and mri report wasn’t back. The consultant said the inflammation in my cervical spine had gone but he wasn’t sure if there was any inflammation in the middle of my back. The professor of neurology came and spoke to me and he said he thinks he can see a few lesions in my brain. And he said he thinks I’ve got mild MS. But needs the results of everything.

He said he would write to me with the diagnosis and to go back and see him in 3 months. He also put me on steroids for 5 days and said that if the electric/tingling feeling hadn’t gone in 3 weeks to go back and see my dr for him to put me on something more long term.

I had the lumbar puncture the following day which hurt like hell. The woman that did it caught a nerve which made me cry and made me lie on my back for 1 hour. It hurt to walk aswell.

I took the steroids for 5 days and finished taking them on 8th October when I was on holiday. 3 weeks later still have electric/tingling feeling so goin back to the Drs.

Havent had consultant report yet or diagnosis yet so hoping I get that this week. I’m still getting other symptoms aswell so I know something is definitely going on.

Hello Donna

It seems to me that you’ve been told a whole load of confusing garbage. None of it seems as though they’d thought about you as a person having to deal with this. Sometimes doctors are like this, a bit distant and not understanding that offering to write and to see you in 3 months sounds like hell if you’re the one doing the waiting.

It sounds like the neurologist basically said it was MS, but that it was not possible to diagnose it as such because he didn’t have all the pieces of the jigsaw yet. Basically he was probably quite literally correct, but that doesn’t mean is completely confusing.

‘Mild MS’ is an utterly meaningless term (I think). It basically doesn’t exist, until you’ve had MS for say 20 years and it’s remained mild. Otherwise, it’s a guess. He might have meant that at present your lesions are small and in places where you aren’t likely to have a lot of symptoms and/or disability. But, suggesting that you won’t have serious relapses (assuming it is in fact MS) is guesswork.

My LP made me cry too btw, I don’t think it’s unusual. Horrible things. Mostly we only ever have one. I still remember mine from over 20 years ago and I wouldn’t be in any hurry to have another.

Why not try phoning the consultants secretary and ask if the report has been written yet, or maybe whether all the results are back and when you are likely to get the letter?

With regard to the sensory feelings you still have, I wouldn’t be too sure about taking another course of steroids. Steroids are supposed to speed up recovery from an inflammatory attack, ie a relapse. But sometimes they don’t work. And generally, they only work when you take them very early in the relapse. Given that they make you feel like crap, added to the fact that you shouldn’t take them too often (maximum 3 times per year of high dose steroids), also added to the fact that many GPs are uncertain when and at what dose to prescribe them, I’d not be in a hurry to take any more for this relapse.

If you don’t have steroids, or they just didn’t do the job (either because it was a bit late for them to help or because they just didn’t - contrary buggers, steroids), the symptoms should slowly get better on their own. Often so slowly that you don’t realise it’s better until you one day, weeks or months later, realise what had been affecting you was gone.

When/if you speak to the consultants secretary, you could ask whether you’ll be referred to an MS nurse. They would be the best person to help you through the maze that is an MS diagnosis.

Or of course, come back here, we’ll do our best to help you through this horrible time. It seems to last forever when you are the one living it, but neurologists don’t really get that.

Sue

Yeah Thank you Sue. When I was in the appointment I’d taken a list of symptoms that I’d had since my first appointment back in August and it felt like he wasn’t listening to what I was saying. Yeah I did feel confused. I’ve phoned the Drs secretary apparently he’s been away for 2 weeks but my reports are in his office for him to look at so hopefully I should know what the outcome is in a couple of weeks.