I’ve been following this forum for a while now, I recently became a member so that I could post once I’d summoned the courage. Well here it goes.
Please bare with me if I ramble, I’ll try my best to keep it simple. I had corrective scoliosis surgery 4 years ago. Post op, once I’d fully recovered I had 1 whole year of pure bliss. Completely pain free, able to get on with life without limitations and be the mum I always should have been. Then one day out the blue, I started to experience pins and needles from trunk down (started only in hot bath, then progressed to any random time/position etc) I didn’t think much into it. Over the next couple of weeks lots more strange sensory issues were coming in thick and fast. (Intense burning sensation, wet trickling down legs, stabbing electric shocks, creepy crawly arms, tingly scalp and lips, severe cramping of muscles, just to name a few!) I went and saw my orthopaedic surgeon, he gave me nerve blocker injections which gave me no relief, In fact I was in horrendous pain for the 10 days following. I just accepted this was something I’d have to put up with now, my 1 year of bliss was over and I’d have to get used to my new normal. Then I started passing out at random times, which was quite scary. I thought maybe I’m stressed, maybe I’m not eating enough veg (?!) just clutching at straws to not worry myself. Keep calm and carry on, as you do! Next was severe chest tightenings. I endured 5 days of constant chest pain, it got to the point where my husband took me to A and E. They kept me in, then released me after finding no apparent cause. So again, I kept calm and carried on. Next my eye sight went blurry. All of a sudden, I was fine, chatting with a friend. Next I could barely see through the blur and there were strange lights, squiggles etc in my visions. This lasted for about an hour. After then, it would come back suddenly but not as severe. Then disappear as quick as it came. After this I was left with a permanent black spot in my vision. I went to the optician, was told I had scarring on my retinas, so that’s why I experienced those symptoms and now have a black spot, flashes/floaters. At my next appointment with ortho, he said he couldn’t find any reason for these symptoms on my xrays i.e no trapped nerves, deterioration of rods in my spine etc. He suggested I ask my doctor for a referral to neurology. Well, I’m now another year down the line having been backwards and forwards to top Neuro hospital. I had a range of bloods taken, all cane back normal. My Neuro mentioned the possibility of ms, my reflexes were abnormal, balance, etc. It had never crossed my mind till this point. It suddenly all made sense. For the last 5 weeks, I’ve been waiting patiently for vep, ncs, temperature test (although the guy that tested me said I’d failed the test, but wait for written results) and most importantly my mri results. Today I received a copy of the letter he sent to my doctor. It simply said “here is a report of her mri. There is nothing more I need to do at this stage”. So I’m assuming this means he no longer suspects ms, that the scan was clear? Why no letter to me explaining this? And now what, I just live with my unexplained symptoms? Keep putting up with them getting worse? I’m back at square one of just not knowing, not understanding and just keep living with the pain? I could cry. I’m obviously relieved at the prospect of it not being ms but I now feel more in the dark than ever. Any wise words of wisdom to get me through? Has anyone here been through similar and overcome it, or had some answers? If you’ve made it this far through my ramble then thank you. I truly appreciated the time taken and any replies I may receive. Thanks.