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.
Wednesday, 25 December 2013
Another huge nocturnal seizure!
So much for the neurologist saying all is ok. I know the scan and the EEG came back clear but Dan had a huge episode during the night (Christmas Eve 2013). Considering the neurologist did not seem to know much at all about Vasculitis I don't feel so reassured today. Something is causing this to happen. Dan was really scared as it lasted so long. He was semi-conscious again but unable to call out or do anything to stop the body jerking and neck twisting.
I do feel that even our immunologist is a little out of her depth. She has told us she is not an expert and she will seek help when needed so I think we will have to try and look into this further.
Maybe I am just over protective but I just have a niggling feeling this is more than "sleep disturbance".
Wishing everybody a Happy Christmas and healthy New Year.
I do feel that even our immunologist is a little out of her depth. She has told us she is not an expert and she will seek help when needed so I think we will have to try and look into this further.
Maybe I am just over protective but I just have a niggling feeling this is more than "sleep disturbance".
Wishing everybody a Happy Christmas and healthy New Year.
Thursday, 5 December 2013
Waiting for brain scan results.
Dan has now had an EEG and an MRI brain scan with dye.
For some unknown reason the seizures have, at the moment, stopped. This is good news but of course it means Dan has had the tests done at a time when things have settled. We go to the neurologist on Monday 16th December for results. In a way I hope they show something just so we know what we are dealing with. This cannot have happened for no reason?
Although the neurologist is based in the same hospital as Dan's Vasculitis doctor he did not even know what vasculitis was let alone the effect on the brain. His clinic was next door to the normal clinic but he did not even know what med's Dan is taking. We shall see.
In the meantime, Dan's GP called to say he has to go and have further blood tests in January as there is something not right with the thyroid results. Dan is losing weight at the moment and has patchy hair loss and is still generally unwell. I don't know how he will take it if he has to take even more medication.
he seems to be coping OK with the Imuran etc so I am hoping things settle. He has had some rashes break out but the night sweats have stopped and his lungs seem clearer. The immunologist has asked Dan to see a dentist as he should have regular hygienist appointments as apparently it is easy to get gum infections that can cause problems. Dan looks after his teeth well so it is just a precaution.
It will be good to get the results out of the way.
I will post again after the 16th.
For some unknown reason the seizures have, at the moment, stopped. This is good news but of course it means Dan has had the tests done at a time when things have settled. We go to the neurologist on Monday 16th December for results. In a way I hope they show something just so we know what we are dealing with. This cannot have happened for no reason?
Although the neurologist is based in the same hospital as Dan's Vasculitis doctor he did not even know what vasculitis was let alone the effect on the brain. His clinic was next door to the normal clinic but he did not even know what med's Dan is taking. We shall see.
In the meantime, Dan's GP called to say he has to go and have further blood tests in January as there is something not right with the thyroid results. Dan is losing weight at the moment and has patchy hair loss and is still generally unwell. I don't know how he will take it if he has to take even more medication.
he seems to be coping OK with the Imuran etc so I am hoping things settle. He has had some rashes break out but the night sweats have stopped and his lungs seem clearer. The immunologist has asked Dan to see a dentist as he should have regular hygienist appointments as apparently it is easy to get gum infections that can cause problems. Dan looks after his teeth well so it is just a precaution.
It will be good to get the results out of the way.
I will post again after the 16th.
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