Writing here for some support how to make a long story short back in 1998 I had a seizure I didn't know what was happening in years before in my late teens and had two together but didn't know at the time they were painful and not what you think of seizures. I went to a neurologist who told me it probably never happen again something to do with pain. Two months later another seizure again back to the neurologist he was 95% sure that it was an epilepsy. No brain scan nothing sent home phoned epileptic society is thought it might be they offered for £3000 for me to go and see one of their consultants. Which I couldn't afford. Another couple of months I had two very large seizures together my partner knew the ambulance person who blue lighted me down to the hospital I was under.I couldn't remain conscious Urinated myself I have bitten my tongue it was so swollen I couldn't even fit in my mouth. When my mum arrived at the hospital my partner are going to get a wheelchair to get a taxi because the discharge me. My couldn't believe it insisted that I was admitted I had an MRI scan done only to show a 5 1/2 cm AVM on the brain. It had caused epilepsy. I was treated at Derrford then John Radcliffe in Oxford.
During the procedure to treat the AVM I had a small stroke only my right leg was affected.
Before they let me leave the hospital They made sure provisions were made for me at home bath board alarm call social worker walking stick adaptions for the home carer twice a week.
Within two years I was able to walk without the stick most of the adaptions were forgotten about to this day I still walk with a right sided limp I was able to go back to work.
2010 I started experiencing tiredness joint pain I went to the doctors was given Ibuprofen which is already taking. I remember my manager saying to me we can see its physical that you're ill. The Cook where I worked Couldn't understand to her she's gone to the doctors with hip pain within three weeks was diagnosed with rheumatoid arthritis and thought that I haven't gone to the doctors.
I lost count of the times that I went gone in because my legs were so painful for the nurse to check that it wasn't a blood clot and to tell me that my legs that were swollen weren't.
I was living and Ibuprofen and paracetamol four times a day God knows how many cans of deep heat and muscle rub that I went through.
I felt ashamed and unkept every time I went to the doctors I was offered antidepressants and I love this bit at some point then diagnose fibro what I'd like to know is when were going to tell the patient???
I couldn't even move at times even with the ibuprofen and paracetamol
Finally end of 2011 they run blood test and thought it might be lupus Waited another few months to see rheumatologist it's all me for no more than 10 minutes Suggested I stop smoking told me to see me in another couple of months sent me for a chest x-ray didn't check the results didn't do A urine test told me that I'd have to repeat all the bloods again to make sure that with that no pain relief no drugs
So back to the attic be fine and the paracetamol muscle rub
I started having pain in my side back and neck
I was wheezing and started coughing up blood less than four weeks after seeing him
I took myself to A and E after seeing couple of junior doctors guess what still no pain relief 15 hours later I suppose I should be thankful I was on a hospital trolley not trying to sit in a hospital chair in agony. CT Scan showed a large blood clot on the lung i've gone into A and E at seven in the morning about 11:30 at night I was finally put on the ward still no painkillers next morning heparin to start dissolving the blood clot penicillin for the pneumonia.
Whenever I look back at that I just want to thank the idiot rheumatologist especially reading that 50% of lupus patients die if left on treated which is what you did let somebody on treated with lupus.
Let out of hospital couldn't even get in the bath it hurt everywhere warfarin dosage and guess what no pain relief
Going back to coming out of John Radcliffe bath board walking stick alarm call adaptions around the house carer when I came out of the hospital and I was far far worse then when I came at the John Radcliffe I had absolutely no help what so ever no pain relief no drugs no clinical diagnosis suspected lupus blood clot on the lung couldn't even bath myself. Yeah I felt depressed really depressed suicidal.
Finally I get an appointment again for the rheumatologist not in the best of moods with him for some reason can't think why. Finally he gives me antimalarials and steroids still couldn't get in the bath but I felt a lot better I couldn move reasonably well still in a lot of pain no pain relief.
Unable to work but had to go back due to no diagnosis no benefits.
Didn't see that rheumatologist again sent to another one about eight months later
She sent me for a few scans neurology didn't want to see me started trying to take me off the steroids had already started noticing my balance wasn't right muscle spasms to the point where I would have some think in my hand and I couldn't let it go.
Went to see the rheumatologist my blood count for clotting it risen to 47 which she explained should be in the normal range of between four and 16.
I was then put on Immune suppressants
She left the hospital no new appointments were ever made and I went without seen a rheumatologist for 18 months.
New hospital because I had to move because I nearly became homeless got an adapted flat only to be told that I was had to go back to work my ESA council tenancy friend to have it because I couldn't pay the rent and I was entitled to housing benefit.
To me the lupus at stepped-up as having lower back pains heavy periods no periods I think the worst symptom was it was like walking on ice balance just wasn't there
Muscle spasms trying to put pick up a cup and missing see the court but I just miss trying to pick it up.
I was diagnosed with Huges syndrome or sticky blood when finally after 18 months I saw on the rheumatologist they decided I wasn't so does that mean I stop the warfarin and I felt like saying to them well if you take me off the immune suppressants that the other rheumatologist put on and the warfarin maybe the sticky blood would come back and possibly kill me this time.
Also on several occasions the nurses popped head through the door and traces of blood and protein been found in my urine but according to the rheumatologist today that doesn't mean that with kidney involvement the back pain specially lower back pain fact that I'm getting up sometimes to go to the toilet in the middle of the night though the symptoms of kidney involvement.
Balance problems and coordination problems headaches where I feel physically sick and have to lay down and take paracetamol like the beef and a possible signs of it actually been on the brain.
Joint pain and the only thing that helped with it is ibuprofen and tiredness sometimes fever feeling sick in the morning hot have to lie down slow movement on steady balance yes I agree to a certain extent The immune suppressant are working
But I still feel the symptoms of lupus the not the epilepsy they're not Fibo malaria which he says it is.
All the time that I've had traces of blood and protein in my year in test he has never sent for any other test scans to see if the kidneys are inflamed.
What sort of idiot does he think I am it's my legs it's my shoulder it's my arm it's my feet my ankle is permanently swollen but to him I have no inflammation in my body
It's been five years since they last tested to see what my blood clotting was like glass count it was still high
All I can say remind me of the neurologist nearly 20 years ago I decided that it was 95% sure it was neurological or epilepsy need to be proven completely and Otley run that nearly cost me my lifeAll I can say remind me of the neurologist nearly 20 years ago I decided that it was 95% sure it was neurological or epilepsy only to be proven completely wrong and could of cost me my life.
Today he's put all the symptoms down to Fibo malaria
In other words that condition could be treated with pain relief from your doctors and if you continue taking your medication you be okay and I don't need to see you again
So much for being seen 3 to 6 months by your rheumatologist that the condition is monitored closely
The saddest story that I've got telly is off of my grandmother that I never got to meet she died before I was born she was sectioned under the mental health that for Abing schizophrenia given electric shock treatment Paul anybody told me about it that she was really ill one of the cuteness stop working if she died of a heart attack on the living room floor alone one thing that stands out to me today it's the only photograph left e is it my mum and that's wha Paul anybody told me about it that she was really ill one of the cuteness stop working if she died of a heart attack on the living room floor alone one thing that stands out to me today it's the only photograph left mum and dads wedding and across the face is that a fucking butterfly rash
45 years passed since her death medication may have improved understanding and treatment at the condition has not.
The fact that I'm being sign back to my GP that night when I come in with chest pains or schizophrenia paranoia delusional hallucinations kidney complaints will or might find me back over to rheumatology who might pick it up within what 3 or 6months
Leaving me nearly at deaths door again certainly facing unemployment homelessness because I can't afford to pay rent when I'm unemployed in pain.
Today I feel like booking a flight to Switzerland get it over and done with
On cancer urgent pathway
Opinions on Lupus in men
Worried about my Hubby
ANA now negative but still ill
Finally got diagnosis 
