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
First off I want to welcome you to the WHL family. I am glad you finally decided to post!
sadly your story is all too familiar. People go for months and years waiting to be diagnosed because there is no actual test for Lupus and too few doctors really understand it. I personally went through much of what you are going through and the frustration level gets to be almost too much to stand.
While we are not doctors and can't help you that way just know that we will be here for you on the rest of this journey. You are no longer alone. You are now a part of our family so feel free to ask questions, vent, yell, cry or do what you need to do.
Keep us posted on how things go
So sorry you're getting the run-around and no answers. Unfortunately, many of us have had similar experiences prior to obtaining a diagnosis.
Don't give up. Stay persistent. Come here to vent your spleen and ask questions.
Thank you Mari and BonusMom. It was lovely to receive your replies. Even though sometimes I don't even need a name for this "thing" - a cup is still a cup by any other name - I know those close to me need my illness validated/named out of their own frustration with it. Especially when I end up being hospitalised because it's so bad. I try to stay strong, but as you know it gets hard when the pain is really bad and you don't have an answer to give when others ask: why? Xxxx
I am also sorry that you are suffering so greatly without definitive answers. It sounds as if the doctor at the hospital was much more willing to help you than the neuro was. At least he was intelligent enough to know that your bloodwork could change because the disease, itself, changes. However,the neuro was right, it might be good for you to see a rheumatologist (hopefully one who knows about Lupus) and have your bloodwork done again.
We are here to help you in any way that we can. I wish you the very best and hope that you get some answers, or at least some effective treatment.
Peace and Blessings
The run around from doctors can be very frustrating for us. I have been getting this as well from doctors. Please stay persistent in finding the answers you deserve. I hope you find the answer soon. Please stay strong and know we are always here to listen.
Keep at it - it's hard to be persistent when you're hurting, but if we don't advocate for ourselves, nobody else will. Be patient and don't stop until you get somebody who will help you feel better, regardless of what label they put on it (Lupus, etc). Some doctors LOATHE uncertainty, and that is why they don't want patients like us. Some doctors enjoy the mystery, respect your experience (no matter how confusing), and will work with you. Find one of those...they ARE out there! Stay calm and confident that there IS a way to feel better - it may just take a while to find it.
You have lots of good company here....glad you found us!