Good afternoon and I hope everyone is feel as well as can be. Sorry for long post.
Elimination project or rather, process of elimination. As everyone knows, I have had a pretty problematic year.
Two stays in hospital for horrendous flares and new symptoms added both times. Nov 2018, was taken to hospital in London from work. Jaundice, nausea, headache, dizziness, speech issues but, what upset me the most, was the fact that when I said what is going on with my head, it was cast off because their main issue was my AIH flare. They said nothing about my fuzzy head or the fact couldn't recognize words or write letters.
Started on 40mg pred and then transferred back to Pinderfields in Yorkshire, which is closer to home. After a 2 week stay and my bloods coming down, I was sent home.
Since this hospital stay, I have not been able to control my condition. In June of this year I had another flare complete with jaundice. Was finally sent to see a hepatolagist at York hospital. He wanted me to go in hospital I refused because they would only put me on a high dose steroid drip. I rather take them by mouth at home despite hating them. I was stuck on high dose prednisolone again then tapered down. I was also put on mycophenolate rather that the mercaptopurin...I had been taking for the past almost 7 years.
Anyway in August this horrible thing happened, swollen abdomen, headache dizzy, slurred speech, sleepiness, confusion, and no appetite to name a few. I thought it was the new medication which my consultant stopped.
In October, I was switched from prednisolone to budesonide and that has its problems. I am currently only taking budesonide because we thought the mycophenolate was a problem, now I am not so sure.
This swelling thing has happened a few times since August and when I say swollen abdomen and body I mean, I bought a dress in September for a dinner party. The dress was my usual size and fit me perfectly.
I bought the dress on the Monday before the dinner and it's a good job I tried it on the morning of the dinner party, because when I did to my horror, it wouldn't fit and I'm not joking, I had to go buy one 2 sizes bigger because I was so swollen even my face. The dress fits me well in between episodes of swelling.
Anyway, since this incident I get this on a regular basis and I have my own thoughts about what it could be but, no one is listening.
So by process of elimination, blood pressure raised, they gave me blood pressure medication, which makes my head worse.
ECG is normal so why do I need blood pressure medication.
Headache, nausea, sleepiness, slurred speech, brain fog.
CT scan on brain, normal.
Dizzy clinic today, no inner ear problems.
Constipation..happens before any problems start. BLT said try lactulose..guess what, things improve.
So by process of elimination then...and considering all parameters...is it HE...everything is pointing to this..blood test after blood test with nothing wrong. Elimination of the medication I thought was causing the problem...addition of nothing more than lactulose.
My gp said today and I quote "between you and I, and the process of elimination it has to be autoimmune.
What does everyone else think?
Thank you. X
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