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Advice needed......

Hi my names Louise, and I’m feeling a little anxious. Four years ago, I was diagnosed with Transverse Myelitis with possible ms, after suddenly waking up one morning with pins and needles in my feet, which over the next few weeks had spread to most parts of my body making me numb all over…including my bladder area. I had a lumber punch…which was negative and an MRI scan which showed scarring on my cervical spine and two scars on my brain. I couldn’t take any steroids suggested as I was pregnant at the time. After 8 months and after I’d had the most horrendous birth all had cleared. Over the last four years I have had on and off pins and needles which have only lasted days. Also the tiredness…where I could if possible sleep for days. I have been under a neuro consultant ever since and have had six more MRI scans which have always shown the same amount of scarring as the first. I am writing this as 6 days ago the pins and needles have started again, first just in my toes, then my feet and have now spread up the back of my legs. I feel emotional and tired, I could literally cry over spilt milk. My memory seems shot aswell, I walk into a room and completely forget what I am in the room for. I go to say something but can’t remember what it is I want to say. My question is, at what point do I seek help? Do I seek help? Is it necessary? If it is ms, nothing can be done anyway, right? I am feeling scared.

Hi, It must be a worry for you not to have a handle that you can hang your symptoms on but I am not sure what more you can do. If you are seeing a neuro consultant regularly enough for you to have had 6 MRIs in 4 years it sounds as though your condition is being investigated. It is very frustrating that you don’t have a definitive dx but why are you so convinced it is MS when the consultant is not? What does your GP think about it all? Jane

Hi Loublou.
Please don’t despair!
Contrary to your mistaken understanding, if it turns out you do have MS there are lots of treatments open to you these days!
Unfortunately there is no definitive test for MS, once everything else has been ruled out only then can a definitive diagnosis
be given, usually based on symptomatic evidence.

By the way do you know your Nickname means “Love” in Russian?!

Made me smile anyway!

Take Great Care and seek as much help as you possibly can!!!

Steve.

Hi

Most of us will relate to you feeling scared- strange things happening to our bodies is scary, ad you don’t know what’s round the corner. You don’t have to put on a brave face though, and it’s normal to feel like a bit of an emotional wreck. But don’t suffer alone - call your neuro, and your GP, as there are drugs that can help with things like fatigue & pain. And call on us too for any advice, or just to offload how you feel to people who understand.

Dan

(P.S I’m exactly the same as you with the memory. There’s a group of us with MS that meet up regularly, and some of the conversations can take ages as we all forget the names of things or can’t think of the right word!)

hi loublou

just want to agree with dan and steve and say you should ask your gp if he can precribe for you.

as for memory - a lot of people my age (56) are struggling with it too and they dont have ms!

so one aspect of me is normal!!

carole x