I just wanted to thank everyone who kindly offered support and prayers for my Dad (and me) when he was in hospital. He very sadly passed away nearly two weeks ago, so this is a busy time now - sorting the funeral, services, supporting Mum etc etc.
You may remember that on my last visit to the neuro I was told that all MRIs were clear, and all blood work was also clear, and yet I was still (and am still) getting awful symptoms. I am to have physio on my right leg which has somehow twisted outwards and I now walk like half a penguin, and on my hands which are incredibly painful most of the time. I am also waiting for nerve conductor tests, lumbar puncture (maybe), and CBT too (have agreed to this as I am happy to go along with anything neuro suggests). My meds have stayed the same, but I am to up the carbamazapine, and down the tramadol, try to stop the propranalol (to see if I start jerking again).
Anyway, my symptoms havent changed at all since my Dad died so for me I think that rules out stress related symptoms. I am still in pain every day, I still twitch all the time, I still feel the horrible cold water down the leg feelings, I still have back spasms on a daily basis, I still have double vision (mainly in right eye and not all the time), and I still have abnormal responses to all the tests neuro did.
So I stay in limbo. Neuro said there is no evidence of demylinating (which is great), but also said I may have to have all the MRIs again in 6-12 months time. She said there is so far, no evidence of MS or CNS tumour, no brain tumour, but she is still going to see me every 3 months to keep a very close eye on what is happening to me.
So, today, still grieving for my wonderful dad, and trying hard to support my devastated mum (53 years they were together), I am taking the tabs as agreed, am still in pain, and still wondering what is going on with my body.
Thanks to anyone who has actually got to this point of this essay!!
Paula xx