Mr. CrankyPants and I made the very long 10 hour round trip drive to see two of my specialists in one day plus I had a nerve conduction test done. We wanted to get both docs in so as not to have to make more trips. This was on Tues. Sept. 18/18.
I saw a Neurologist up there for the first time. Thankfully she was amazing. I was seeing her due to a tremor I had. The nerve conduction test was normal thankfully but…
She found I had abnormal reflexes. They were too strong. So..
I now have to have a head and spine MRI done to look for MS. It’s not like I hadn’t thought of this possibility before, but when a doc has concern about it, then it becomes more real.
My second appointment was a follow up with my Rheumie. The Humira is helping me which is good. But (Yes again)…
It’s not helping enough and so technically I need to be taking it more often. Unfortunately I can’t do that right now.
I can’t do that because my Rheumie wonders if the Humira isn’t causing some of my neurological symptoms. So we actually had to make a decision whether or not I continue on Humira whilst I wait for an MRI or not. We decided to continue, because when the Humira starts to wear of the pain gets really bad. So we’re not upping it, just staying on the same dose for now.
Having said that I don’t think that Humira is what’s causing my symptoms and here’s why. When I saw a Neurologist as a kid for my epilepsy, I remember him being concerned about my reflexes back then. I was never on Humira then. Also the cognitive symptoms like struggling to get words out and finishing sentences started when I was on Methotrexate and not on Humira. My Rheumie said she’s heard of mxt causing that but she’s never heard of it continuing for people after they came off of it. I’m always a damn ground breaker.
My memory was bad before Humira and much worse after Methotrexate. So to me, the symptoms don’t line up with taking Humira.
I guess I will find out. Who knows when. The wait for an MRI can be a very long one. I don’t know if they’ll fast track it given my circumstances at all but I don’t hold my breath.
I have to say I really like the Neurologist. She was kind, funny, thorough and really listened. She went through my whole list of concerns. I totally trust her with my care. That’s saying a lot coming from me. I’ve had a lot of bad experiences and I don’t trust many docs. I’m glad that I can trust the one looking after my brain.
My Rheumie on the other hand, I’d love to smack her. She’s giving me the meds I need, but she’s arrogant. She doesn’t like to listen and god forbid you might suggest something to her. Or let her know what you’re not willing to put in your body. I tolerate her for now because I need her. I stood my ground and made sure she listened to and answered all my questions and concerns. I pushed for what I needed whether she liked it or not. It’s too bad though that I had to fight for it. It’s tiring. We were up at 4:30 am to make the long trip there so I was going to make sure she gave me the time of day. And I did.
Word has it they will be bringing a Rheumie into our city once a month again. If that happens and it’s a decent one I will switch so I don’t have to travel anymore or deal with arrogance. (Hopefully).
I’m trying not to think too much about what could come of this MRI, but it’s hard not to be scared. Last year I was given 3 diagnosis in one year and I’ve hardly had time to wrap my head around them, now this.
I’m tired and overwhelmed. And ticked off that we’ve had a lot of snow this Sept. Argh! Having said that things have been so busy, I just keep going.
How are you all doing?
Warmer Days & No Snow,