A bit of good news. Dan's brain scan and ECG came back OK. They still have no idea what is causing the nocturnal seizures. But then, they don't seem to know much about Vasculitis in this department.
Anyway, he feels a lot happier now. He is still very thin so the next thing to do in the New Year is to re-test for the thyroid.
Hoping 2014 will be a better year for everybody.
Hi Elaine,
ReplyDeleteFirstly I would like to say thanks for sharing this and as a parent my heart goes out to you.
I'm 53 years of age and I have just been diagnosed with UV although I have been unwell for sometime and no one seemed able to pin it down. Everything you are describing about Dan I have also experienced. In fact it could have been written about me. !! My symptom list is so vast that it is sometimes difficult to know where to begin.
I also have Graves disease and know that the two often go together. What comes first I don't know.
In June 2013 following chronic severe chest pain and suspected TIA's I had a cardiac angiogram which showed blood vessel abnormalities but not the coronary artery disease type. I take medicine to prevent blood clots and to keep my blood vessels dilated.
I am now waiting on a head MRI because like Dan I have had debilitating headaches, bloodshot and painful right eye, seizure like symptoms and pulsating tinnitus in my right ear.
I also suffer from severe angioedema and allergic reactions to things , particularly insect bites. I was recently admitted to hospital with anaphylaxic shock. It was terrifying.
I also have recurring joint pain in my knees and hands and intermittent neutropenia and leukopenia.
Like Dan I feel much worse during the summer months and I am currently taking Imuran. I hate taking this drug but feel that I have no choice.
I'm really pleased to hear that Dan's MRI went well but I share your frustrations that no one seems to know very much about this cruel disease. I assume that you been in touch with Vasculitis UK ? If not they are a great source of information and are pretty clued up about which consultants are best. That said UV seems to be pretty rare so I guess that they are learning as much as we are.
I hope Dan continues to feel well.
Take care
Liz