I got a letter from my neuro yesterday, she is referring me for more tests post my recent nerve conduction studies. Well, that's fine, thanks for sending a copy of the referral to keep me up to date.
Imagine my surprise to read that I have 'documented neurosarcoidosis'. What the ....... ????? So I get busy with google, and start reading about myself. I have hunted forever for information that sounds like me in terms of all the weird brainstem problems, my tongue and swallowing problems, etc etc, but this neuroscarcoidosis just sounds like me. I have been around the block too many times with too many diagnoses and symptoms to get too excited (or worried) it's more that this just seems so weird. It can also cause problems in limbs, which may explain all these weird problems I am having with my arm (which now struggles to hold a knife at the dinner table).
Who knows, I certainly don't, and I have no doubt this is lupus doing its number on me. Of course, in a rare disease (neuroscardosis) I have to have the more unusual symptoms with my tongue and swallowing problems.
It's the 'documented' bit that gets me - when did it get documented, and why wasn't I told ? I am trying to figure out whether this is part of my lupus rather than something separate, and I strongly suspect that it is just part of my lupus. It always is. I am having all the right treatment for either disease, so that's no worry. My neuro repeatedly tells me that my rheumie is giving me the best possible treatment for all my neuro problems, which I know anyway (pred, plaq, cytoxan ,rituxan, etc etc).
This is just so weird. It reminds me of the time when I was having iv cytoxan, just kicking back reading my hospital file (the only good thing about cytoxan is access to my file). Well, I read a letter from another doctor that said 'she has developed a right sided facial drop'. Well I grabbed my iv pole, ran for the nearest mirror and yeap, there it was, a small facial drop on one side. Why the heck he didn't tell me I will never know.
I will stress that this is not common, my doctors generally keep me very up to date with what is going on, which is why I am finding this all very strange.
Also - documented - doesn't that mean 'has tested positive for' ?
hope you all had a fabulous weekend - I did, I've just got back from an overnight trip away, we had a blast. I have Monday/ Tuesday off work (yay!) which is just great.