Forum

Trying to come to terms with something I don't know

I got optic neuritis back in April and that was the first time ms was mentioned to me. Since then I’ve had weakness, numbness and tingling in my arms and legs. The neurologist sent me for an mri and i got the results in a letter today, but I haven’t spoken to him since. I have several inflammatory lesions in my brain and some in my spinal cord and he now wants me to get a lumbar puncture. I know that everything is pointing towards ms, but I still don’t have a diagnosis and I haven’t been able to talk to my neurologist. I’m scared and I get upset at times, but I feel like a bit of a fraud because I don’t even know if I have it yet. Everything seems to be taking so long, it took me 6 months to get an mri after my opthamologist first referred me for one and I’m just feeling like I have no control over anything any more. Has anyone else felt similar?

Hi Rosannee

When I had problems with my sight (double vision), I was sent from my opticians to my doctor back to the eye department in the QMC our local hospital, they fixed my vision by giving me a plastic prism for my glasses.

They then told me to come back when they sent a new appointment, which they did but I saw the doctor he said that he wanted me to have an MRI to clear up some questions (this was in July) . So they gave me an MRI in August. Then in September got a letter from the neurologist for an appointment out of the blue i certainly didn’t ask for a second opinion.

So in October there I was asked lots of questions, having lots of tests balance, walking, hand to eye. He then asked why I was there, I didn’t know why? he then said about MS three times in the conversation. That he wanted me to have a second MRI plus a lumber puncture and blood test. I went home being puzzled but not upset.

Roll on to November I get a letter, telling me that I have 4th nerve palsy which is my double vision, then he told me that I had some changes in my brain nothing to worry about but one change that looks like demyelinating disease?

What the heck was demyelinating disease? looking up dr Google up came MS as the most common of them, that’s how I came on this site.

Moving on I was given an appointment for the neurologist in April and for my LP in January, no problems there but now I am waiting for my MRI appointment which I do think it will be in March. now I am just waiting.

They call it here limboland and the not knowing is the killer you can’t do anything about it, you can’t take anything to help with it

I am in pain (hip, back), tremors in my left hand, walking up the stairs I wobble all over the place I can’t carry two things a drink and clean clothes or the drink goes every where on the floor. I have to grab really hard on the banister. Getting up from the floor I find it very hard to do plus my left arm feels bumpy when I try to use it. Last but not least I am light headed when I stand up, not all the time.

This has taken a year to get this far, I did have double vision for a couple of months before going to the opticians in February.

So yes I do know what you feel like, you can though phone the neurologists secretary to ask what’s happening or your local hospital or your own doctor and see if they can speed it up. It’s worth a go. All the best.

Kay

Hello Rosannee

First of all you are not a fraud. This part of the MSS forum is for both the newly diagnosed and the un-diagnosed. So there are many people in a similar position to yourself and Kay who come here for advice and support, while they are living in the hell that is limbo.

It is a very frightening place to be, having symptoms and tests, not having anyone to speak to about your worries and fear. Being scared that you’ll get a diagnosis of MS, but almost more frightened of not getting a diagnosis of anything, just remaining in the situation you are in now.

We do understand.

You could phone the neurologists secretary and ask if you could have the contact details of a local MS nurse, and whether you’d be able to see/speak to a nurse about the tests and what you are feeling?

Otherwise, keep coming here. We’ll try to help.

Having multiple lesions in your brain and spine is very scary news. This is what the MS Trust says about lesions: https://www.mstrust.org.uk/a-z/lesion It isn’t of much help to know you have lesions cause by your immune system beating up your own cells, wrongly identifying them as foreign invaders. But sometimes a little bit of understanding at least helps you to explain it to other people.

I remember when I was first tested for MS (22 years ago!) I was told I had a couple of lesions by a doctor, and when I asked ‘what’s a lesion?’ he just said oh just a sort of mark. Useless. And that was back in the days before the internet ruled our lives. (Possibly a good thing, I couldn’t have a session with Dr Google!) Try to avoid random Googling, look at the information on this site (see the box marked ‘About MS’) or the MS Trust. The information you’ll get will be accurate and up to date.

Hopefully your lumbar puncture and then a follow up appointment with the neurologist will come sooner than you’ve experienced so far. And then maybe you’ll have something definite to get your head around. But in the meantime, if you have questions, queries, just want to hang about with people who understand, then feel free to come here.

Sue