I've been off work now for 5 weeks. I probably should have stopped working a couple of months before that because I stopped being able to do my job about then. My brain sort of stopped working with me. In June I had an MRI that showed a number of leisions in my white matter and evidence of vasculitis in my brain. On the advice of my local rheumy I sent the images and report to St Thomas so they could be studied for my next appointment (last week). From August onwards my vision worsened, double and problems focusing. I was having weekly migraines, absences and episodes of memory loss when I would completely forget how to do something (like use a limb or count). It got so bad I went to my GP, he sent me for bloods and signed me off work . He felt that time away from public interviews and using a computer and rest may help.
My blood results came back showing abnormal clotting and an INR of 0.9, I was able to convince him to give me Clexane until my appointment at St Thomas.
At St Thomas I saw a different Doctor. The NeuroPsych referral that was supposed to have been done last year had not been done, they did not have copies of reports from my neurologist or my local rheumatologist and worst of all they had received and lost the disc containing the MRI images of my brain damage. They had the accompanying report and letter but not the disc.
The doctor did not seem impressed that my GP had given me clexane and told me that she did not believe that it would have made any difference to me yet as it does not work that fast when I told her that it had cleared my head and that without it I would not have been able to get to the appointment with her. I had been taking it for 4 days by then and I know that it had already made a massive difference to the way my head felt.
She sent me for 14 blood tests, said she would arrange for neurological testing, asked me to send another copy of my MRI and that she would see me in 3 months.
I asked about continuing the clexane, she just shrugged and said that she would call me in 10 days when she had the blood results as she couldn't advise me anything until then. But as my GP had given me clexane now I should carry on. It will be 10 days tomorrow.
So why do I feel like I have to have a major blood clot before I am taken seriously? I know what is wrong with me and I know what treatment I need. I know how much better I feel now that my blood is thinner but I want to be treated with a bit of respect and to discuss my treatment options.
I want to discuss the damage in my brain and know the consequences of it I don't deserve to feel like I am not ill enough because I was able to hold an intellegent conversation.
It took a lot to get to the hospital and a couple of days to recover and still I feel like I am not believed.
Rant over.......Thank you for reading
Love Sharon xxx