Ten ton weight comes crashing down

Hey everyone,

I went to see my neurologist today expecting to get an answer instead I left feeling really disappointed and angry!

I didn't sleep a wink last night worrying weather or not it was going to be bad or worse news, so this morning I was a bag of nerves waiting for the time I had to leave. I had been going over and over in my head for four months what the result would be. I debated with myself and looked at it from all possible angles, so this appointment was really important to me. I've never been so scared in my life about anything like this and this morning, that ten ton weight crashed down on me but didn't completely crush me?

We arrived on time for my appointment and waited for the nurse to do my blood pressure. I was shaking like a leaf when the nurse was doing my blood pressure, I'm surprised it wasn't through the roof the way my heart was pumping! Once she had finished that we were directed to sit outside the consultation rooms. There were three registrar and my consultant (I found out later) was working but it still toke forty-five minutes to be seen.

While we were waiting my consultant came out to call a patient, this was the first time I had ever seen a consultant! I got to look him in face for all of two seconds! Me and my husband was shocked to see he was working and it gave a fain hope that we might be seen by him, we were severally disappointed. He came out of the consultation room and picked up the files of people waiting to be seen. I got a flicker of excitement when I saw him pick up my folder and flick through it, then my heart sank when I saw him putting my folder back and calling someone else's name.

A registrar called my name and I walked into the consultation room. I had prepared myself before the appointment by writing all my symptoms down, wrote out questions so I didn't forget and had my report from the optician all ready, I shouldn't have bothered. He asked me if I was told anything about my condition, I said that I was told that I had small fibre neuropathy and that I was to have blood test and a MRI brain scan. He asked me if I had been sent the results, which I hadn't so he told me my blood test was normal (which I had gathered anyway) and that the only thing that was lacking was vitamin D, my brain scan on the other hand was....

Normal! I couldn't believe it, they had found nothing wrong (as far as he says but I don't trust that because he only skimmed the results, not read them fully) I was so shocked and I thought that's it, its worse! I then started to panic spitting out "but what about my eye?" he said to me "whats wrong with your eye?" I began to explain that I have blurriness, double vision, nysrigmys (which is your eye shaking) and pain centred in my right eye mainly. He looked at me with a kind of smirk on his face and asked, "what do you mean by your eye shaking?" I said that my eye shakes and gave him the report from the optician. Again he just skimmed over it and dismissed it.

He began to look into my eye and do small eye tests, he used a red pin and I had to focus on his eye and tell him when I could see the pin. While doing these test he held two fingers up (I found out later) just to the side and asked me "how many fingers am I holding up?" I said "three!" When he had finished he said that my behind my eye was swollen and that I had "Functional neurological symptoms and that with physiotherapy within a year, I will be fine and back paying Income tax" That's his exact words and sums up completely what he thinks about me!

He looked at me and thought "yeah OK she's twenty three, married and got two kids, she's a benefit scrounger!" It wasn't just that, that made me come to that conclusion, he asked me if I worked, if I've ever worked, when I gave up and if my husband worked or had! That was none of his business for a start, and I don't see what relevant it has to my condition! I know why he wanted to know because he thought that I had just made up this condition just so I could claim disability benefit. Now I don't know why people would choose to defraud DLA as it is one of the hardest to claim even if you have a medical condition.

I went in there paper in hand, ready to ask my questions, how many did he answer? none! I asked him "can I get help with my spasms and aching cramp like pain?
"its part of your neurological condition"
"can I get help with fatigue?"
"its part of your neurological condition"
"can I get help with my eye problem and maybe a referral to a eye specialist?"
"emm"
"can I have a referral to the pain clinic?"
"emm" The best one was "am I under a neurological team?"
"of course you are, if your under Dr. Foster then your under a neurological team"
"well then can I see an Occupational therapy"
"what for? Occupational therapists are for when you work" No their not!
"well I've contacted my local social services but they want to know if I'm under a neurological team as I won't be using their services"
"what for?"
"well their going to help by doing adaptations to my flat"
"you won't need any as you will be fine in a year"

So as you can see I got really far! He reckons with a year's worth of physiotherapy that I will be back to my good old self!

He gave me a website to look at, which describes what he thinks I have,
http://www.neurosymptoms.org/ this is bull-crap! (excuse my language) its infuriated me as it hasn't got anything to do with my condition, all his done is take some of my symptoms and seen that my tests have all come back normal. The thing his "suggesting" that I have is to be diagnosed through bed tests which he never did only checked my eyes.

I challenge anyone to take my symptoms and find a neurological problem that isn't MS!

Symptoms:
Eye:
Eye pain centering in my eye and going towards the back of my head, double vision, blurring, eye shake, its mainly in my right eye but can affect my left, when I move my head quickly I see flashes like camera flash or lightening,
Burning pain:
Chest, arms, hands, fingers, lower tummy, groin, legs, feet, toes
Aching cramp like pain:
arms, hands, fingers, leg, knees, feet, toes
Numbness:
arms, hand, fingers, waist, (sometimes) legs, feet, toes,
Weakness:
arms, hands, fingers, legs, knees, feet
Spasms so bad they keep me awake or unable to rest,
Twitching in my eye, head, arms, hands, legs, feet,
Foot drags along floor while walking,
Loss of coordination,
Forgetting were my feet are mostly,
Shake when doing fine motor skill movements,
Vertigo,
Bowel and urinary urgency,
Memory Loss and forgetfulness,
Panic attacks,
Depression,
Mood swings,
Fatigue,
Burning pain gets worse with heat,
My hands and feet are always cold,
Eye pain gets worse when tired,
and recently I'm having trouble swallowing.

I have one more chance to get a diagnosis as the one good thing his done is sent me for a lumbar puncture, I will have that in two weeks (depending on when the hospital sends the letter) and hopefully, fingers and toes crossed there will be an end to it all.

Thank you for reading xxxx