Another question

Everyday living
1

Hi,

I wasdiagnosed in september and have seen my MS nurse twice for half an hour but as she didn’t have my notes from the neuro I had to go through everything that had happened so had very little time to actually ask questions so I am afraid I will have to ask you lot.

I am assuming that I have RRMS although nothing has been said. I had transverse myelitis at diagnosis in my right lleg which then went down my left leg and now have ON. None of my symptoms have improved ( did have IV steroids in Sept which made me feel a bit better).

What I want to know is if I have RRMS and relapses stop will I feel back to normal again or should I expect to feel this tired and peculiar forever?

Thanks again

Emma

2

Emma,

Make an appointment with your GP and ask him to show you the letters from your Neurologist. I would say make an appointment with your Neurologist but it may likely be in the summer, this one or next year…

I was diagnosised in 1998, but because I was a nurse he thought I understood stuff, used lots of medical terms but never said, “you have MS” Due to this, I never really came to terms with it, perhaps I was in denial, but it wasn’t until last year, whilst reading my medical notes did I really take it all in!! Stupid or what!?

As to how you will feel in the future,

“How long is a piece of string…”

Good luck and phone GP Monday x

3

Hi Emma,

Basically, if you have distinct episodes from which you have recovered (even partially), you almost certainly have RRMS.

I think you said in your last post you’d had 2-3 such episodes, or attacks, with the current ON being the latest. This sounded like relapsing remitting

However, I’m less clear now, because if none of the “attacks” have ever eased even slightly, and things have only got worse, it points to it perhaps not being RRMS after all.

I certainly agree with Fififlower that an appointment with your GP should clarify a lot of this. Your doctor should have been told exactly what you’ve been diagnosed with - not only MS, but what type.

My neuro’s letter to my doctor had it bold and underlined, right at the top, so there could be no misunderstandings. I was also “on copy” of this letter, which I believe should be the norm any time your consultant writes to your GP - but sadly, doesn’t always happen.

But your doc should certainly know, regardless whether you were on copy or not.

I’m afraid, for many people with RRMS, remission is relative, not absolute. It means you’re better than you were, but not necessarily that you’re feeling fine and able to carry on as if you didn’t have MS.

Certainly, in my own case, I feel I did recover completely from early episodes (before I was diagnosed) - to the point I never really suspected anything sinister.

But about two years ago, I had a bad attack, which led to my diagnosis, and from which I never fully recovered - though you wouldn’t know it to look at me. I’m certainly better than I was, but never like someone who’s completely well.

I hope this doesn’t sound too depressing. On the contrary, I hope it’s reassuring that it’s common or even “normal” still to have symptoms between attacks, and it doesn’t necessarily follow that you have a progressive type.

Tina

4

Nothing about the MonSter is easy, simple, or straightforward, Emma. No two people are the same, but a lot are similar.
I started with a tingling feeling and some numbness in my ankles, which spread up my legs (mostly my left) right up to the armpits. It eased off over a few weeks (see below).

After the onset, I was diagnosed with Transverse Inflammatory Myelitis (Sept 2007). This was changed to MS in April 2008. In between were two MRI scans, an LP, and loads of injections, and tablets. The symptoms had almost entirely vanished within weeks of onset (and I went off to a conference in Prague able to walk well, but a touch slower than in the past). In '08 I went to another conference in the USA, still able to walk slowly - and my colleagues slowed down to my speed.

I had a relapse, called the neuro who had been looking after me and found that he had left the previous week, The MS Nurse sorted out IV steroids for me and a quick session with the new Neuro - who turned the diagnosis back to Transverse Myelitis. Later he turned it back to MS (saying that he did not like to give the bad news all in one go).

Fast forward to '09, and yet another relapse. I was having IV steroids, and a colleague was presenting my conference paper in Washington. Time to retire, I thought, and finished a few months later (and I was already part time). By now, I can still walk OK, but I needed a stick for stability.

The next relapse was in Oct 2010. Oral steroids this time - and while I did recover, it was only to the point where I really do need a stick to walk any distance at all.

Now that is one person’s experience. In my local GP surgery, one of the nurses has MS. In her words “On good days I drive my own manual shift car. On bad days I take my husband’s automatic. If it is really really bad I stay at home”. That is another person’s view.

Steroids tend to make the recovery faster, but have side effects and you really do not want them too often. The rough guide is al least six months apart. How effective they are may well depend in just where your particular problem is. TIM (before the diagnosis is changed) is usually in the spinal column, and there may be no brain lesions at all.

The big thing about a diagnosis of MS is that if you drive, you absolutely MUST tell the DVLA and your insurance company quickly. The only practical effect is that you may get a 3-year driving licence, but you would have to be really, really, bad before any Neuro will say that you are not OK to drive.

Just do not let MS beat you …

Geoff

5

Hi Marie and welcome to the site

I am sorry that I can’t help with your question as I’ve not experienced that symptom.

However you will get more replies to your question if you post it as a new topic

Go to the Everyday Living home page http://www.mssociety.org.uk/forum/1213 and click on New post.

Good Luck!

Anne