Thursday, June 29, 2017

I'm Not Okay I am 34,500 mg of solu-medrol later and I'm really not okay.

I'm better than I was. I have had some exceptional days in the last 15 months. I've had days I thought this whole thing was going to be a bad memory I would never have to remember again. I've had days I thought I was back to my own version of normal. It hasn't all been good, but I have had a general upward trajectory that had me convinced I wouldn't be in the pit again. At least not with this same thing.


I'm not okay.

Something is very wrong.

I am not have the same thought problems that I was before and that's a REALLY GOOD THING. I am not having the same level of word finding problems that I was before and that's a REALLY GOOD THING. You know I LOVE words. Not finding words is torture. :D  But I'm having really strange symptoms that come and go like ocean waves.

Nausea (that seems new, I don't remember feel that before)
Right ear pain
Head bobbing thing
Emotional craziness*
Not being able to "get things done"
Memory issues (but this isn't nearly as bad as it was)
Tingling/numbness in my hands and feet (and down my arms)
Extreme fatigue
Sleep issues (this is in no way correlated to the fatigue)
These weird electrical type pains that shoot down a limb at strange times
Electrical sensation in my tongue (this happened once-SO STRANGE)
Random swelling in my hands, knees, and feet (this doesn't seem related to food at all but who knows)
Pressure in my head (feels like my head is very full but it doesn't seem like sinus stuff)
Low back pain or neck/base of skull pain (not related to physical activity)
Intermittent blurry vision (this might be completely normal from what the eye dr told me but it feels very related and random)
Random I will be walking and all of the sudden a pain shocks me to the point I almost stumble, or I'll be sitting at my desk and a random pain makes me double over or suck in a deep breath.
It hasn't happened in a while (like a month) but there's a strange thing that happens where I feel like things are backward. A couple of examples: I was driving and really felt STRONGLY that I was on the wrong side of the car and the wrong side of the road. Last year it showed up when I would type-I felt like my hands were on the keyboard wrong. In both cases I would sit there and look, trying to figure out how it could possibly be different (there isn't a steering wheel on the other side of the car, there's no other way to have your hands on the keyboard).
My brain feels "hot" or like it's burning sometimes. Not like a fever, but like there's a fire inside of my head. I used to think this was psychosomatic because there's a book called "Brain on Fire" but it's not there all the time and it shocks me when it's there.


Let me be clear....the type of antibody that was attacking Susannah Cahalan's brain is NOT attacking my brain. Her condition progressed very rapidly and was severe. There are numerous types of autoantibodies and they attack in different ways. They didn't identify the autoantibody that is causing my trouble. (My spinal fluid wasn't sent to Mayo Clinic and HH doesn't run the same battery of tests. By the time I got to Mayo I had already had 7500mg of solu-medrol so the doctor said doing another spinal tap wasn't worth it because we already knew steroids were working and it might not even show up.)

My hope is to find out the CAUSE of this thing that is happening to me, not just to find a drug that will slow/stop the symptoms. A lot of doctors say it's impossible to find a cause but not all of them say that.

I have an appointment with a doctor in Chicago a week from Monday. Well, I have an appointment at the clinic and most likely I'll see both doctors! They do EXTENSIVE biochemistry testing. I don't know if this is the answer (or part of the answer) but I feel confident that this is a good direction for me right now. After the appointment I get the labs drawn and then it takes about 5-6 weeks to get results and analysis. So...we shall see.

All I can do right now is keep moving forward. It's like Ironman. It doesn't always feel good, but sometimes it does.

Thanks for stopping in and sticking around.

*So I feel like I should clarify what I mean by "emotional craziness" since if you know me, you know I'm a highly emotional being. I mean that sometimes my emotions don't seem to fit with what's going on. Specifically I am crying a lot. Randomly. Unrelated to what's happening or how I'm really feeling. This is different that my normal "cry at the simplest things" way of life. So far I haven't laughed inappropriately so that's encouraging I guess.

1 comment:

  1. Be sure to let me know what the doctors say. I am sorry I am not there to help you and wish there was something I could do to make this go away. I love you and I send kisses to hopefully make you feel better.


Don't hold back, tell it like it is....