Ok, so I have one week and a day till I see the neuro again and (hopefully) get to know exactly what is wrong with me, and in the meantime I have been getting steadily worse over the past few months
It all started with Optic Neuritis in the right eye, followed by the left eye, followed by jerking right arm, tremors in right arm, numbness of right side of face, constant twitches all over - neck, abdomen, both legs, both arms, pins and needles in right side, blah blah blah.
I have been off work now since February - before the symptoms started I was caring for my brother in law who was terminally ill (he died beginning of April). I am pretty sure that my job has been given to someone else now (work as a personal assistant to an author) as boss cant be waiting around for me to get better, and needs someone daily.
The situation with me today is that I live on Tramadol painkillers, Carbamazapine, propranalol and amiltriptylene. My right foot now turns outwards and so walking is tough unless I am holding onto someone or using a stick (indoors only as I am not comfortable using a stick outside). I have fallen so many times over the past few months that I am permanently covered in bruises; I also walk into doors and walls. I have the most horrible internal tremor when I do even the smallest of things (like wash up), the fatigue means I am in bed by 10 and wake up at gone 10, and sleep in the afternoon for a couple of hours. My hands hurt… like really hurt alot most of the time and I get shooting pains from my elbows to my fingers, and from my knees to my feet. My right foot (the dodgy one) seems to either drag along or lift up too high when I am walking. The twitches/jerks are still constant and I feel so embarrassed not to be able to even sign my name on a prescription because of them. I cant speak eloquently any more as by the time I have got mid way through a sentence, I have forgotten what I was saying. I constantly forget the words for general everyday items, and often end up saying the wrong word such as ‘put the milk back in the tv’. I have had MRIs of spine and brain, VEP, and oh so many blood tests! And I see my GP every other week so my life is a constant round of hospital and doctors.
So to summarise, I am a total wreck most of the time
But on the plus side, my left eyesight is back to normal, and my right eyesight is good enough for me to drive again (after 4 months of not driving). And I have found out who my true friends are. People I have been friends with for over 30 years do not contact me, and yet people I havent known for too long have been great.
I am scared of seeing the neuro next week, and yet I am looking forward to it. I have nightmares at least once a week that she tells me I have syphilis/AIDS/terminal cancer/Parkinsons/Motor Neurone etc. and yet I NEED to know why my body is acting this way.
My fiance is unbelieveably amazing. He is supportive, kind, understanding and thoughtful, but we dont live together though I see him Friday to Sunday each week. My children (adults) are good, but they still dont realise everything that is going on. I have 4 children 28, 26, 21 and 17, and my 21 yr old son tells me I need to prepare myself for an MS diagnosis, and that he feels I am not prepared at all even though the GP and neuro have told me they think I have MS. But I dont want to worry my kids and tell them everything; particularly my 17 yr daughter as it is just not fair to ‘burden’ her.
Sorry for the long story; this has taken me ages as I constantly type the wrong word and my hands hurt so much!
I just need to get things off my chest I think and this is the only ‘safe’ place to do that without worrying anyone any more than they are already.