Neurology follow-up

February 3, 2020

Did anyone notice the date was 02/02/2020 yesterday? Date palindrome? 🤷 I think if I wasn't married already, I would have picked that date. No one can use the excuse they forgot with a date like that.

Enough about that...I saw my actual neurologist for the first time, post-Lemtrada.  He's a talker and I had a bladder ultrasound; we were there for a total of 4.5 hours.  It's a time commitment to be his patient but he's a great doctor and I don't have to see him every time so that helps too.  Not a whole lot to update about, really.  The gist is that I am right where I should be; nothing is out of the ordinary.  I did express that I was a little disappointed that I haven't seen any improvement and actually feel worse but at the same time I was telling myself that it's still early.  Of course they agreed with the "it's still early sentiment" and said many people don't start to see improvement until the 6 month point and others don't see improvement until the second dose.  So I am not out of the ordinary; he also said that it is possible that the divergence of my T & B-cells could be part of what's making me feel bad.  They are still planning to have me do the Rituxan; he was pretty confident that he could get it approved after the peer review and phone call.  The other option is to do a dose of steroids.  The steroids don't target the B-cells as directly but helps to get them more in line.  We decided that I would do a dose of steroids in the near term because I would need them either way and then hope that the week after I can do the Rituxan.

The bladder ultrasound was to see if I am fully emptying my bladder.  They measure the size of your bladder then you go to the bathroom and they measure again.  It should be close to 0, mine was not.  So now I am going to a gynecologist who specializes in urology issues to make sure it's a MS thing and not a physical thing. More fun to look forward to. 😣

That was basically it; of course they did all the strength and sensory tests and I didn't have any changes there.  It's always a little shocking when they do the tuning fork test and on my foot it feels like it's stopped but then they put it on my hand and it's still vibrating.  Also, the neurology fellow checked my eyes and made a comment (to the medical student in the room) about the nerve in my right eye showing damage from the optic neuropathy I had.  That was way back in 2005 and no one has ever mentioned they could see it.  That took me by surprise but he also said it wasn't new/hadn't changed.

My mom is coming to visit this week; I am excited about that.  I have my Solumedrol infusion already scheduled for next week after she heads home. Should be a good week. 😊