Newly diagnosed (ish)

New diagnosis and before diagnosis
1

Hi everyone,

I’m new on here and thought I’d give it a go.

I was diagnosed last November and apparently I’ve had this for about 24 years. The first time anything was wrong was about 23 years ago when my torso went numb, this lasted for about six months. I spent a week in hospital at the time, lumber puncture, MRI’s, whispered conversations in the corridor about whether I was on drugs! I wasn’t by the way, not really. As mentioned, after six months it just went away. I vividly remember whilst I was in hospital, the guy in the next bed telling me he had been diagnosed with MS and being properly shocked. It never occurred to me that I had it and seemingly didn’t occur to the doctors either.

Anyway, jump forward about ten years and my feet went numb for about six months, all sorts of tests again and then it went away. They offered me a brain scan, but the symptoms had gone, so I thought ‘what’s the point, I’m fine!’

For the past ten years I’ve had all this niggly annoying stuff, like bladder and bowel problems. I even had some operations on my bladder even though I had asked two different doctors/consultants whether, when considering other symptoms I had, there was any chance it could be a neurological issue, which of course, it turned out to be. About three years ago my legs and feet started burning all the time and this has been investigated for the last two years (yes I did leave it a year before telling the doctor, it might have gone away!) and last November after having a brain scan, they found two lovely scars in there and put two and two together to make MS.

That’s it basically, for the last few months I’ve been having various tablets to try and ease the burning, haven’t really been enjoying the side effects and had no relief yet.

Anyway, thanks for reading, I don’t have any specific questions but would welcome any comments, I don’t know what type I’ve got or anything, and don’t know what to think at the moment.

Thanks again.

2

hi derick

wow 24 years is a bit of a record to be in limbo.

i relate to the burning, mine is in my feet.

so have been diagnosed with ms and you should have been offered a DMD.

also an ms nurse,

that’s two things to ask.

best wishes

carole x

3

Hello Derick

Your early experience sounds very similar to mine. I started going numb in January of 1997, saw a neurologist, spent a week in hospital having MRI, LP and VEP. Amazingly, the woman in the bed next to mine had MS too. It honestly never crossed my mind that they were testing for MS though, I just thought I was a medical mystery. (No such thing as Dr Google in those days!) When they’d finished the tests they told me ‘it’s not MS’ (to which I said ‘of course it’s not!’), gave me IV steroids, and sent me on my way.

In actual fact, after being diagnosed 5 years later, I got a copy of the discharge summary sent to my GP. It seems clear now that they did think it was ‘a demyelinating condition’, LP was positive and I had two lesions. But they said in the letter ‘we won’t mention MS unless she specifically asks’.

Nowadays I’d probably be diagnosed with CIS, but at least I’d maybe have had an inkling as to what caused spasms, ON, numbness and other relapses I’d had over 5 years.

I didn’t lose out particularly, disease modifying drugs (DMDs) weren’t widely available until my year of actual diagnosis. You, on the other hand, could have been on DMDs to prevent relapses for at least the last 10 years while you’ve clearly been having relapses.

Have the neurologists declared that you have relapsing remitting MS still? If so, are they offering you DMDs? If they are, it’s not too late to take them. It may prevent a major, possibly disabling, relapse.

Meanwhile, re burning feet, I find Amitriptyline to be good for that. It’s a drug best taken in the evening so you don’t get side effects the following day (so by around 8pm).

Welcome to the forum anyway. It’s a place you clearly didn’t expect to be, and none of us enjoy the reason why we’re here, but you’ll find it’s a supportive and caring community. And one in which we manage to laugh a bit too.

Sue

4

Hi Derick,

You’re very welcome to the Forum.

You’ll find a lot of friendly, helpful people here. The collective experience of the this Forum is it’s strength. We have people with all forms of MS and having a wide range of treatments.

So, if you would like to ask a question, or just blow off some steam, this is the place; because no one understands MS like we do.

Best wishes,

Anthony

5

Hi Carol,

Hmm, never been in contention for a record before!

I’ve been given an MS nurse, but what are DMD’s ?

Thanks for the reply,

Derick

6

Thanks for the welcome Sue.

No, I haven’t been offered disease modifying drugs and I don’t know what type I have. I’m taking Gabapentin for the burning at the moment and it doesn’t seem to be doing anything yet, prior to that I had baclofen which didn’t do anything. To be honest, I’ll try whatever they tell me to, but if I keep just getting side effects and no relief it seems worse than just putting up with the burning.

I wonder why they decided not to tell you about MS unless you asked? What a strange decision. I wonder whether they might have suspected it with me back in the beginning?

With the amitripyline, when you take it at night does the relieving effect last all the next day? I suspect it might be on the cards for me at some point.

Thanks again for the welcome,

Derick

7

Thanks for the welcome Anthony!

I haven’t got much of a clue what type of stuff I should be asking yet, but at least I know who to ask now when something does occur to me.

Thanks again,

Derick

8

Hi Derrick, welcome

9

Thanks Sarah, take care.