Oh wow! I'm sorry to hear you've had such a rough time of it. Glad that you seem to be on the mend now. I'll definitely keep you in my thoughts and prayers!
I haven't experienced any issues with CFV leakage, but there have been a few other issues. I'm not used to taking medication -- I usually try to tough stuff out and let my immune system handle it. So having such a strong steroid in my system (Dexamethasone) and the subsequent "dosing down" really did a number on me. I lost some hair, broke out, regressed in my balance and vision, and worst of all, was achy like you couldn't believe. I couldn't get comfortable, couldn't sleep, and every joint was just in pain. It was like having the flu on top of everything else -- no fun! And not surprisingly, I was *ahem* kinda cranky.
Oh yeah -- and the right side of my face and tongue are still numb. But I do think they're slowly getting a bit better.
When I did my two week follow-up visit with Dr. Lim, he said everything looked good. I got a bit panicked because of all the above symptoms, especially the face numbness. I was convinced something was still terribly wrong. (I'm usually very reasoned and level-headed, so I blame the steroids.
) Dr. Lim was kind enough to ask one of the ENT specialists to take a look at me. The ENT was amazing. He did a thorough exam and told me everything was normal. I was incredibly relieved.
As of right now, everything else (except the face/tongue numbness) is pretty much back to normal. I only have one new symptom. My pulse and blood pressure have gone through the roof. It has always been normal until this point, so I don't know what is causing it and I'm pretty worried (which isn't helpful in keeping it down, of course). I went to my primary care doctor and she gave me a mild medication, but so far I'm not seeing much difference. And I'd rather my body correct itself naturally and not need meds, if possible.
You're right, it is a tough journey. But hopefully the worst of it has passed and things will only get better from here!
