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Being tested for MS

Hi. Im 28 and I have been told for the last year I have CFS. (This was after being told for years my symptoms point to the fact I have children). I went to see my doc a couple of months back (May) and she sort of freaked out a little and sent me for an urgent appointment with a neurologist. (Before then, I was just told “you are fine, keep up with the low dose of meds I have given you” even though I have told them I am getting worse). I was told the wait to see one was 8 weeks, I got to see mine in 2 weeks. He looked quite worried aswell, especially when I couldn’t even walk from the chair to the examination room, which was about 10 feet away, without my walking stick. I am off for tests in a week or so - eeg, ecg, nerve tests and brain scans - and I am starting to get really worried as I looked up the symptoms of MS this morning and they sound very close to home.

My uncle had MS, but he wasn’t a blood relative, he was my mums step uncle. I watched him get worse over the years until he could barely walk and I am so scared that is going to happen to me as I have 3 children who depend on me (they are between 2 and 8). I am grateful that my husband works from home as I can not do houeswork - apart from most of the cooking and some of the washing up. I’ve been told that I sound like I have had a stroke when I am tred because I slur really badly. My ears ring so badly they feel almost numb and detached if that makes sense and there are other symptoms I can connect with.

What should I expect from the tests and beyond?

I’ve just posted almost the same thing. I am in exactly the same position as you - having being diagnosed with CFS/ME and have just been tested for MS. As I only have one lesion, they won’t diagnose MS. I’m not sure how I feel about that but having lived with ME for years, I’m a bit fed up now. If you want to know what the tests I had were like, I’d be happy to share.

xx

it’s usually MRI scan which will give the neuro some idea. if it looks like it might be ms you’ll probably have a lumbar puncture to confirm it.

don’t worry. MRI is absolutely painless but if you are claustrophobic you should ask your gp to prescribe something to help.

lumbar puncture looks and sounds gruesome but it isn’t really. it’s basically like an epidural.

good luck

carole x

Hello, and welcome to the site

The first thing you should know is that everyone’s MS is different so your MS (IF it is MS) may be completely different to your uncle’s. The second thing to know is that meds and treatments are WAY better these days so that symptoms are much more easily managed. So, try not to worry too much - focus on the now and not on the future, and keep an open mind about what’s going on because there are literally hundreds of conditions (some of which are treatable) that might be causing your problems.

As far as the tests go, there’s nothing to worry about. The nerve tests can be a bit uncomfortable (mini electric shocks to get a response from your muscles), but the rest are completely painless.

It sounds like you’re in good hands, so try and hang in there - let them do their job, come up with the answer and then get you on the right treatments to deal with everything. I hope it doesn’t take too long.

Karen x

Hello from me aswell.

Just to confirm what Karen said,my mom had ms and mine is in no way following the path hers did and I am on dmds which she never had either.

It helps on here as you will find many people who have the same problems as you, but equally they dont share others,we all seem to have differing bits and pieces of what goes in the ms melting pot.

One positive is that even with the problems you now have,as a family unit you have found ways to cope. If you do get a dx it will at least open doorways to services and meds that may help.

Limbo is an awful place,we all know that,but you have come to the right place for advice,support,straight answers from people who experience living with ms and the consequences,together with a place to share the good times–and be down right daft sometimes.

Take care

Pip

Thankyou everyone and hello :slight_smile:

Pinklady, im really sorry things arent going the right way for you at the moment x