Ok this is the start of my journey! so as they say, let’s start from the very beginning…..
I’m 28 and was diagnosed with MS on Monday 4th August 2014. I was expecting the news as it had been mentioned at earlier appointments. I was strangly quite relieved to have it finally set in stone, it had finally ended the ‘what if’ stage and started the ‘where do I go from here now’ stage, which I think is a better place to be.
It first started in 2013, It was during my second pregnancy, i was nearly 5 months pregnant and I started getting pins and needles in my fingers on my right hand, it then spend to my hand and up my right arm. Then I started dropping things, cups and plates would just literally tip out of my hand! My coordination went next, I’d go to put the phone down at work and I’d miss? I’d place something down and it would slam really hard. I’d never had anything like this happen before, I thought it was just a trapped nerve or something like that.
I wasn’t really worried until I lost the use of my whole right arm. It was just floppy and had no sensation, I couldn’t grip anything or even move it. If I was touching something I couldn’t feel the material, couldn’t tell if it was warm or cold, I couldn’t tell if slamming my hand down hurt! Nothing was causing me pain and I remember at the time being more worried as we were going on a family holiday in a few weeks and I was supposed to be the driver.
In April 2013 I rang my GP who told me to come straight down, I was then to see a neurologist the same day as an emergency, I think this urgency was due to the pregnancy more than a concern for me as I was fine otherwise. There was lots of tests done at the hospital but all showed I was ok, but as I was pregnant I couldn’t have an MRI scan, I was assured that nothing was harming me or the baby and was possibly a trapped nerve somewhere in my neck.
We went on holiday, my arm was still useless and I couldn’t drive so we ended up taking 3 trains and 2 taxis! my poor husband had to carry the bags, then later my 3year old daughter when she got tired. This was not the best idea we had, but we still managed to have a lovely holiday.
Fast forward about 5 weeks and the feeling came back to all except my fingertips, I was at work, doing school runs and I was just grateful that my arm worked again. I wasn’t bothered really about my finger tips, as i assumed the feeling would come back eventually . Life was busy.
I then had my little boy who was absolutely perfect! He was poorly when he was born and spent some time in neonatal. It was a emotional and crazy time for us, but he came home after onlyba short stay. I felt so happy, I had my little family complete. I’d stop noticing that the feeling had not returned to my fingers, I used to joke about how I can now pick hot stuff straight from the oven! Life was moving and we were enjoying being a family of four now, we were to go on our next family holiday with both kids in April 2014.
The pins and needles started getting worse in my hand and arm, Id ignored it as I was too busy, I also started getting excruciating pain in my wrist and shoulder, almost like I’d been slammed into a wall, or thrown from a car. Again I wrote it off, I must have slept funny or pulled something, maybe it’s from carrying the baby around in the car seat. I always had a reason.
Then I dropped a cup of tea – just like last time my hand juat tipped on its own. It was back.
This time the Dr didn’t seem overly concerned and I had to practically beg for the MRI that couldn’t be done when I was pregnant. Surely they would find the nerve, untrap it in some way and all will be sorted.
I was booked for an MRI scan on my neck, I went to the local hospital and lay in the tube. No one can just relax with that noise surely? The day after the scan the hospital rang me and said I needed to come back down for a scan on my head the next day. I guess you know it’s something when things move fast. The next day the Dr rang to say he was going to send me to see a neurologist – MS was mentioned for the first time.
I was quite shocked but almost glad they had found something in a way. I was however really confused as it didn’t really fit. The idea I had of people with MS is they use a stick or wheelchair and are tired all the time? I suppose I was waiting to be told it was something else, maybe something similar but not MS. It did start to sink in a bit more as you have time to digest the information while you wait for your next appointment. So I was prepared when I seen the neurologist again, she wasn’t looking for anything else it seemed this was MS, we just needed to prove it. I’d had 2 attacks but at they were both on my right hand she couldn’t diagnose as there needs to be 2 separate attacks. Still not a definite yes or no, this drove me crazy! Another MRI scan was booked this time using the dye to see the damage and lesions. So off I went for more scans, this time they scanned me as normal, then while I was still lying down in exactly the same position they injected some dye in to my arm.
This brings me back to now…. on Friday I was contacted by Barbara who is my MS nurse, i was told when i seen the neorolgist I may need to see her. I’d still not hear back about my scans yet? So is this a yes or no? she confirmed the scans were what we thought and said I should have had a letter from the neurologist confirming my diagnosis, ERM no? OK she wanted to see me Monday to discuss treatment.
So here I am…. I thought this would be a good way to document my journey, I honestly don’t know enough about everything at the moment and im not 100% sure how I feel about it all, but it’s happening so I’m just going with it for now!