I can not believe I have not been back on in such a long time. That is a shame. No excuses for me. Just to update as the title says still waiting. My lip biopsy will be the week after Easter. I met with the surgeon and he was a very nice doctor, he said he will take four different spots of saliva cells, so four different incisions on the inside of my bottom lip. This will be done as an out patient under general anesthesia which shocked me as I thought it was just an office procedure. Surprise. lol So now I have to go and get a pre op physical first. So much for something I thought would be so simple, lol . I guess when it comes to my health there is no simple, lol. OH well.
I have to say he had this very nice intern with him as he said it was his last week he was going to be a full fledged doctor next week and asked if I minded if he took my health history, so of course I said I did not mind, but when he was left with me, I said to the poor guy, so sorry you really do not want to be stuck doing mine, lol, it is complicated. He just smiled, but eyes got bigger as I started naming things in the autoimmune dept that I had, he he.
I am also waiting for one more test to come back for the MG test called anti-musk antibodies. We will see, a friend of mind who has MG told me to stick my tongue out in a mirror and see if is has tremors in it, well of course I felt silly, but did it anyway, and oh my gosh, it is bad, now I think people who do not have anything wrong might have it too, but I videoed taped it, Yes I am beginning to be weird and taped the thing shaking and wobbling, and doing its own thing. I sent it to my friend with MG and she said, YUP that is called an MG tongue. So not that I believe this but I will show my neuro.
Speaking of neuros, well I have decided that I will not stay where I have two different neuros bounce me back and forth, my brain can not handle that. I need one, and only one that will remember what I am telling them, not notes from one apt to the next between two diff docs who will have two diff opinions I am sure on how to treat me, no thanks. So I made an appointment with my favorite Neurologist who moved 4 hours away. I decided if I have to crawl there I will get there. She can work with my rheumy here as that is what they have been doing anyway. I am sorry but she is the only one I feel comfortable with. So road trip lol, in June. By then I should have all tests back for the anti musk and the biopsy.
Well I can say one thing for sure, when the doctors would ask if the Imuran was working I was always like, I don't know, maybe, dah, but I can tell you now after being off of it for a month it did. I know my swallowing, headaches, the memory is getting worst again, my concentration really sucks, which in turns make the small fiber neuropathy worst. It is like playing ring around the rosy. We all fall down, that is me if they don't get the biopsy done and put me back on Imuran or IVIG.
I have been working hard on marketing our book on Understanding Hashimoto's Encephalopathy.
I have written tv stations that I think there maybe a chance in hell that they maybe interested as it is so rare, but one tv station did say (in Texas) that because it is so rare it would draw such a small audience, I understand this thinking, buttttt it is so rare because it is so underdiagnosed so again it is a circle we keep going around. But I will keep plugging away when I can. It is not the fact that we are promoting the book to get sales as we are promoting the book for awareness. So many people suffer so unnecessary because doctors are afraid to dx a rare disease. Or push the patients off to someone else because they do not want to deal with it. I feel so sorry for so many patients going through the diagnostic hell of being diagnosed, or at least listened too, It breaks my heart. I also think that it will be found to be a disease that runs in families. I hope not for my childrens sake, but I do think in years to come this will be a discovery for HE.
Well for now see ya later, I will be back in a day or two no long breaks any more. No more excuses, lol, I have become good at. lol.
Susie
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