Confused and nervous

New diagnosis and before diagnosis
1

Hi all :slight_smile:

So my mum has MS so i have grown up knowing about it. But back in April my right leg had pins and needles and i couldnt feel it properly, sp i popped into the GP and they sent me straight up to A&E, got there and waited hours for a Dr to listen to my heart, inform me that i wasn’t having a heart attack, and then sent me home.

Fast forward six months and i had achey joints for a couple of days which then progressed to my knees not really supporting me when i was going downstairs and finally on the Friday, i woke up and my left leg didn’t work and the skin at the back was completely numb and the rest of my legs were pins and needley and i couldnt feel parts of them, coupled with the fact that they felt like they were on fire, I took myself back down to the A&E (after having spent the previous evening there). This time, thankfully, they took me seriosuly and sent me by ambulance up to the hospital which is in another town. Originally, they thought that i had jammed my spine but after an MRI, CT Scan and Lumbar puncture they started to throw the word “MS” around… After four days of being in hospital I finally saw the neurologist who said that it looked like an attack of MS as i had a lesion on my spinal cord, but then she also said that it could just be an isolated incident. Then she prescribed me a course of steroids, and then shuffled off on her way and out of my life.

Fast forward three weeks and after many phone calls to the neuro physio rehab team (i was ‘referred’ by the hospital, yet it took three weeks for them to receive the letter) I had my physio appointment. She is pretty sure that i do have MS as we went through a lot of things in my past that have happened, for instance, my hands are really weak and have been for a few months, my previous issue with the legs, the fact that i tend to shake sometimes and that i get tired easily. I didn’t know that these were symptoms…!

I don’t have a nuerologist appointment until March next year but in the mean time, i still cant walk, I am still numb in the backs of my legs and my bum area (cringe) and now my muscles feel like they are on fire if i apply pressure to them.

I just had to get all of that off my chest. I am scared about what this means, I am only 28 and used to be farily healthy (jogging, dancing etc)

Had anybody had my symptoms with the numbness? Does anyone know how i can start to get better, or at least let me know how long this may take to get better? I’m keeping posiitve about it as it is what it is but I have sooooooooooooooooo many questions, and yet i am finding it hard to get any answers

Thank you for reading, sorry if i went on a little bit!! :slight_smile:

2

Hi Willow Rosenbeurg (great name- I’m a massive Buffy fan!) What a lot you have been through. Your story felt very similar to my own experiences, I am 29 and was abandoned by the neuro after my hospital stay. You need to get into see the neuro before March. Give the neuro’s secretary a call, explain that you have been seen by the neuro-rehab team, but are still unable to walk. Be polite but do insist, you can’t be left like this. I have the numbness too, it comes and goes for me, I have lots of sensory symptoms. Sometimes relapses (if you do indeed have ms) can last for weeks even months, so no way to know how long this will last I’m afraid. But getting into see the neuro should help you get some answers, so you can start to move forward. I really hope you start to improve soon, try to be kind to yourself, rest lots and like you said stay positive-it is what it is. Let us know how you get on? Lx

3

Sorry that should have read : I felt like I was abandoned by my neuro after my hospital stay, so I took charge and didn’t back off until I got some much needed help. Didn’t mean to imply you have been abandoned :frowning: Addled brain today :slight_smile:

4

as leora said i also recommend you to try and see a neuro as soon as possible. it it has hard but try to get an appoitment as soon as you can.

in the meantime though, try to help yourself with other fields such as complementary and alternative medicine even if it is just for your mind and soul. xxx