I've been a member here for a while, reading everyone's lovely posts to one another. I'm quite a shy person so it has taken me a lot of courage to write a post but the events of the past few days have persuaded me to be brave.
Before 2012 I was a happy, healthy (40) mummy of four boys with Raynauds and a strange rash on my face. I was training for a marathon because my mum has heart problems and I wanted to raise money. One evening after a weekend of intense gardening I started to suffer with stroke like symptoms. An ambulance was called and I was taken to hospital for a CT scan which was normal. I spent a week in bed after this without even being able to go to the toilet without feeling dizzy and falling over. The doctor gave me a migraine spray which did not work.
Eventually I began to feel better. The disinterested GP said it was a migraine. I started running again but found I could no longer manage the distances; after 3 miles I had chest pain, joint pain and terrible tiredness. I stopped running thinking that I'd feel better after some rest. I didn't and within a month found myself back in an ambulance again. This time I stayed in hospital for a few days and received a referral for an mri and a neuro appointment.
The mri was clear, thank goodness. I saw the neuro who noticed the rash on my face and listened to all my symptoms, (migraine with aura and cognitive problems, temporary blindness at times, intermittent chronic fatigue, joint pain ankle/fingers/knees, Raynauds disease, rash on face, heart murmur, swelling in heat) and suggested Lupus. I said, I think I was tested for that but it was negative. He said, we'll test again, sometimes the blood work changes, anyway you may have the type that doesn't show in the blood. I think you suffer with hemiplegic migraine caused by Lupus. A reason for everything?!!!!??
Two days ago it all happened again. I was taken to hospital with stroke like symptoms. I can only remember being in A&E with unbearable head pain as they administered morphine. I spent the night on the ward, anxious to attend my neuro appointment yesterday. The doctor said they thought I had hemiplegic migraine brought on by Lupus. Still feeling terrible on Friday morning, I persuaded the consultant to discharge me so I could see the neuro. Reluctantly he did and I dragged myself to another hospital, waiting in pain for an hour and half to be seen. Unfortunately it was the end of his clinic. He even muttered that he was anxious to get away. He didn't have my notes and he was still phoning for bloodwork. After a few moments of faffing he said, you don't have lupus. It's not in the blood. I'll give you a prescription for a drug which might help the migraines- are you having one now? Yes I thought you looked awful- this drug might make you put on weight, disrupt your sleep and make you depressed. Um, think maybe a rheumatologist should see you to see if you have the seronegative lupus, quite rare though, bye then.
I was in there for 5 minutes before being ushered out the door because it was lunch time! After dragging myself out of hospital against another doctors wishes. Grrr!
Thank goodness for a sense of humour that helps with the hopelessness within on the bad days. Do we ever get answers?
Thanks for listening. Sorry for the looooong post.
Love Ria x