I am obviously a newbie, it's been fascinating reading though some of the posts and hello to you all.
Well I am on a bit of a learning curve...
I have had symptoms since roughly 11 years old (now 39 female) and no one has ever been able to give me an answer.
I have always had joint inflammation that comes and goes stomache problems and bouts always in winter of sinusitis, ear infections, osphegitis, and other always at the start of autumn and recurring fortnightly until in spring it would stop.
I kept really fit until 7 years ago when towards winter time I noticed if I ran or played football outside my hands would seaze up.
they went totally numb and I could not bend the fingers at all.
I never thought anything of it at the time but the next winter I was again playing football outside and started to get a very strange dull ache at the base of my skull.
The same winter I had unexplained numbness in my left leg radiating from the left buttock right down my leg I dragged my leg about the entire winter.
the pain was awful and I could not control it with pain killers
this was the last year I played football
It was the next year my joints caused me massive problems and I had all but given up excercise by this point I became incredibley depressed and did nothing about going to the doctor and getting help.
The next winter I got the throbbing pain in my neck again and had the worst headache I have ever had to this day
The only way I could describe it to people was like having a head full of broken bottles
I had terrible vertigo and could only lie in one position to relieve the pain.
I then one night whilst managing to drag myself outside for groceries noticed My eyes were incredibley sensitive to oncoming traffics lights
I remember getting back in the house and there being hundreds of black dots from headlights i had past on the road.
My eyes gradually got worst which was what prompted me to visit the doctor
i was sent for an eye test and my right eye had a slightly swollen optic disc and the eye was significantly worse than my left
having never had any eyesight problems i was astonished.
I around the same time was sent to a gastro consult which found swelling and inflammation in several areas but worst at the termial illeum
So I was given a dx of Colitis and have been monitored since by a gastro, Rhuem and and urologist.
However The winter bouts have got worse each year and now I have a colitis dx everything is atributed to that
I have this year(earlier than usual) had a bout of painful eyes starting in the opposit side and different to the first time
It is stong contrasts like for instance this site with it's white background is setting me off with stabbing pains in my left eye and an almost bruised sensation when you press round the sides of the socket.
I have seen an optitian who noted optic disc swelling in both eyes this time
which in my mind is progressive fronm the last time.
I went back to the doctor and had to throw a hissy fit
I find it difficult to explain all the symptoms when getting questioned
i get dizzy in the shower frequently and made the mistake of trying to excercise by going to the gym
I managed for a while until one day I over did it and could not see for ten mins
I quickly worked out it was the air conditioning unit above a bike that was setting me off.
temperature is my biggest problem I would say
I was at a gig ( the first Ive been to in 20 years) and the stifling muggy atmosphere started me off
I felt breathless dizzy started to get palpatations and dizzy my hands and feet started to tingle
I still have a slight tingle down my left hand and thats been four days since the concert.
It's like a jigsaw puzzle I have slowly pieced together
When I feel ill like this I also tend to drag my left toes along the ground
which lead to many falls and toe injuries
Have difficulty holding things and my cordination seems to go
I have diagnosed carpal tunnel in both hands and get the same sensations in my feet
I just find since having the colitis diagnosis no one is interested
I have taken enough of a tantrum I have got a neuro consult and recently had an mri on my head and neck done
just waiting for an appointment.
However the docs attitude because of how I was reffered has been very sceptical
I picked up on this straight away and did not really tell him well the syptoms I suffer
at the time my bladder which I have always had problems with had gone totally numb leaving me unable to feel a full bladder
Yet because I felt so stressed I could not tell him.
I am expecting to go back and be fobbed off told my mri is fine and goodbye
And would like some advice from the community in how to persist with this line of enquiry and what other options are open to me?
The neuro has already told me he thinks it's migraines which even by his addmission don't last for four months and then inexplicabley go away
I can actually bring one of these headaches on now by going for a hot bath or shower
it seems to bring on all the symptoms I have discussed
I also get really severe spasms whilst asleep if i over heat mainly in my foot and knee so painful that they wake me up I also get uncontrollable tremours throughout my body mostly in my hands tho.
I have also recently started to notice I have to be care using a hair dryer I find if it blows on the back of my neck the base of the skull starts throbbing and I feel dizzy and sick.
the same happens if cold blows on this part of my neck except it's more like an electric shock
most odd and sick of getting no answers.
Thanks for looking and look forward to you suggestions!
vicky
