When I first started to be really affected a couple of years ago, I was presenting with severe fatigue and sleeping during the daytime and aching joints in my knees and hips. The only thing to show up in my blood tests were high Tsat 62% and highish ferritin 175.
Within a month I had my first and only episode. I lost the use of my right hand and had one lesion show up on the MRI (I officially don't have MS as I haven't had "multiple" events, but as my sister has it too he said that was what it would be). I was also sent for an EEG and it showed I had some independent focal changes in the anterior temporal regions on both sides indicating Epilepsy. The Neurologist pushed it aside, saying I must have been asleep (I wasn't), and no further testing was done.
Transferrin Saturation (not ferritin)in Epileptics is quite often high and they believe there is a link to iron overload. But I've never had any sign of epilepsy other than on the EEG.
This all happened over one month while my iron was high, especially the Tsat. It's a bit lower now but still in the higher ranges, especially the Tsat 51%. I haven't had any further events, just the fatigue and strange daytime sleeping.
I was then told I had one H282Y/? gene.
I've basically slept every day for 2+ years, barring when I menstruate. So I bit the bullet last week and gave blood. 500mls.
I haven't had a sleeping event since then, not once and I have heaps of energy. It's been quite miraculous. I feel light on my feet and I've basically been busy around home and feeling fine. I don't know how long this is going to last, but it's great.
This is a huge step forward for me. I do feel a little strange, short sharp pains in random areas of my head sometimes, but they are quite tolerable. My stiff knees and hips feel quite fluid now, just a little tinge in one hip. My back is aching now. I have restless legs, and a strange feeling in my chest, almost electric or trembling, but again tolerable, I think I used to feel a lot like this anyway, kind of hyperactive.
I'm waiting for an appointment with a haemotologist now.
My doctor denies I have any iron overload problem