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:(I have been round and round these Healthboards a million times trying to find an answer, advice, help and support to my never ending neurological illness.
I am currently under neurological investigation here in the UK and have been now for nearly 7 years. To say I am worn out is an understatement.
I have had every blood test known to man, MRI scans and a Lumbar puncture.
To date the only thing that has come back positive is the Lumbar puncture, showing Oligoclonal bands in my CSF.
I had a Lymes blood test that apparently came back showing some sort of titer, i was retested and it came back negative, so they have closed the book on that one. I don't know where these bloods are sent for Lymes
testing here, but I am told its not an accurate test!
They have investigated MS, and I been told quite clearly it isnt that, Lupus is a no, R-Arthritis is a no aswell, you name it, they have said no and now I am left undiagnosed with a chronic illness that is deteriorating. My GP is a fantastic man, who is doing his best for me, but he can only do so much and leave me in the hands of the so called proffesionals to try and find an answer.
Just lately I have been very, very unwell. This hasn't come from knowhere, the decline has been gradual but constant and my symptoms are endless.
I was told the other day by the registrar, that sometimes there just isnt an answer and they have draw a line under me at some point and hope for the best. I am disgusted, hurt and in despair at what she said.
My problems started 7 years ago when suddenly I collapsed, I thought I had a stroke. I had a left sided palsy, my speech became slurred, I couldnt walk unaided and everything slowed down. Previously I had been suffering numbness in my left leg and muscle spasms, I put this down to stress as it was more of an annoyance than a problem. Also before I had collpased I had a few occasions when I was out when I felt my legs become weak, as well as breaking out in a sudden sweat. Before these episodes I had also suffered chest pain, it felt like a heart attack at the time and I was twice admitted to Accident and Emergency. BOTH times nothing untowards was found.
When I did collapse, I was told MS could be a possibility, however brain tumour was more likely. I was told this because before I actually collapsed I had an MRI done wich detected a lesion on my brainstem. So the lesion was there before I collapsed.
For three months I couldnt function properly, I couldnt walk unaided, I was very light sensitive, nautious, bowel problems, chronic fatigue and severe headaches.
I came out of that period and recovered but never back to what I was. As time has gone on, I have just carried on, some days good, some days not good. I have declined very slowly over the years with knew symptoms coming along.
I have breathing problems, my lungs have been checked out but at times I feel I cannot get enough air. My lower back and pelvis are now constantly in pain and this has altered my posture. I have joint pain, started in my left knee, now I am getting foot cramps and that one REALLY hurts. My upper arms ache, and some days my left one is to tender to touch. I have had numerous bladder infections, Thrush, inflammed eyes, wrist pain, vomiting, acid reflux, brain fog, (thats a heller)..muscle spasms, no end of abcesses in my teeth, I now got gum disease.
I get short term memory loss and very confused at times, my personalitiy has changed and I am much more angry than I used to be at the slightest of things. I am very sensitive to loud noises and banging, it drives me nuts and I get tinnitus. My ears click and that drives nuts to. My sleep pattern varies from time to time, dependant on how much pain I am in and then lack of sleep doesnt help. I get night sweats and now always sleep with the fan on. I could go on and on and on and on, and anyone reading this would think "what a hypachondriac"...Well its all true.
I am now at the stage where I cannot walk any distance and have a wheelchair. This week I have gone downhill again. Got MAJOR brain fog and these last two days my speech has become slurred again, like a mini stroke, accompanied by full body tremors and a shuffling gait.
These symptoms come and go, and this is what baffles the neuros, they say I am not consistant with one thing.
Tommorrow I am going into hospital to be admitted to the Neuro ward for them to run further tests and obs. I had to fight to get this admission as they were about to wash their hands of me, I have had to make an absolute nuisance of myself and scream from the rooftops. I feel as though my life is fading away before my eyes and did say earlier today that I cannot carry on and at times I don't want to.
A doctor asked me yesterday if I had seen a Phsyciatrist, I asked if this was an question or a suggestion. Its insulting. They say I look parkinsonian because of the shufflng gait and tremors but again don't fit the bill because it comes and goes. Only this time nothing is letting up.
I look like a Zombie and feel extremely ill now with the added frustration of being made to feel like im a nuisance and should just go away.
I have never recalled having any rash, or being bitten by a tic.
I would turn to drink if I thought that helped but it just makes me feel like hell.
Is anyone else in this limbo, should I push them to investigate Lymes again or what. Come on guys, please advise me here, Im just about hanging on with my fingertips.

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