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!
