Awaiting diagnosis
I was hospitalised back in July as I lost the ability to walk due to servere pain in both my knees. Nobody believed my pain as there was no swelling of bruising and my symptoms were 'weird'.
It wasn't until I was in the MRI I realised the nurses voice change tone and I knew they had found something. I was then moved onto a neurology ward and started under going more tests. I was introduced to an MS specialist who had explained to me that MS is possible but also NMO so I had to have specialist blood tests to find out which I had.
In the meantime I started IV steroids then went home with high dose oral steroids and some pain management that wiped me out.
My mobility seemed to be improving until the steroids tapered down to 30mg. I'm in a lot more pain now too as well as stiffness in my calfs and shins. However I've been unable to work as I am a potter and it requires a lot of physical demands.
5 years ago I went to the doctor's as I lost all feeling in my left hand and had reduced sensation in my right. I was told this was Carpal Tunnel and they couldn't do anything for me. I've had kidney problems sincey teenage years and recently had chalazions and styes in my eyes for the last two years.
5 weeks since my hospitalisation I am still at home waiting for my second MRI with contrast results and my blood test results. I have tried ringing my neurologist everyday but no answer. I randomly received a letter saying I am starting Ocrovus DMT in the next couple of weeks and need more blood tests but nobody has explained any of this too me. I'm feeling very overwhelmed and have had to do a lot of research myself.
I still cannot walk properly because of pain and stiffness in my legs, my whole body feels heavy all the time but in particular my legs. I'm exhausted. Being told to reduce my stress whilst also being housebound and unable to make an income without knowing what my future looks like, near or far, is certainly not helping. Any advice welcome!
While the onset of my symptoms was quite different, the confusion, stress, overwhelm, and sense of responsibility to figure it out for yourself sounds so, so familiar. I remember googling ferociously and also fearfully, scared of what might pop up on my screen and also desperate for anything that made sense. At least for me, steroids only made me more emotional and scrambled. Being put on an Ocrevus protocol suggests your doctors have decided you have MS and are giving you the queen mother of DMTs. Please don’t let that drug freak you out. It should tell you your doctors are finally taking you seriously and are taking real steps to protect your brain. As you start it, you’ll have time to learn. You’ll find resources. You’ll find your way back to pottery or find a new door open for you. You’ll find days without the pain. You’ll even find clarity. These things are the gifts of time, so when possible, give yourself a hug and let yourself off the hook for finding all the answers today. You’re in a great place with this app. If you do turn out to have MS, there’s no reason that the « worst case » scenarios you fear today will be yours. No reason! Try and sleep. Let yourself cry. Let others take care of you. You’re going to come through this. That’s not just a platitude. Everyone here is proof that the worst, early days will pass. Praying for you, my friend. ❤️🩹
Over the last 8/9ish years, my health declined gradually and I just got on with it. The last 2 it just went completely downhill and my mum ended up taking me to A&E and was not leaving until we had an answer, ended up in hospital for a week in February, fast forward to now I've got the diagnosis, DMT, physio, support from a community nurse etc If you know something is wrong, you know you better than anyone. Don't ask, tell them this isn't normal and something is wrong I was fobbed off with the usual "tests are normal" "can't find anything" the usual lark for years I do hope you get answers and the proper help soon 🤞