In August of this year I posted on the mostly frustrating journey for me to be accurately diagnosed ... and finally treatment. Now that my anxiety and stress levels have been greatly reduced, due to treatment that is helping me improve, I want to go back a little. This will be more of a hodgepodge, rather than a timeline.
- When I told my neurologist of my diagnosis from the neuromuscular specialist at UCLA, his response was "Wow!" He did say my post was excellent and added that he was most concerned about ruling out Multiple Sclerosis and other more common diseases. I think he understood my feedback and this is truly appreciated.
- When I first saw my neurologist he sent me for an MRI. The technician, upon seeing me drag my feet as I walked in, kindly asked if anyone had mentioned MS. Yes, they had, but do I need him to ask me that? No, technicians, please don't offer up your "suspected diagnosis". All it does is add to my stress and anxiety. Having a cousin with MS, had already raised this fear. Also, if something goes wrong, your risk manager won't appreciate this inappropriate comment.
- When I show up for an appointment, and there is a really sick person next door, please communicate with me and let me know why I'm sitting in the treatment room for an hour... with the lights going out. If you send in a resident/fellow to "take care" of me, as attending, you need to clearly communicate your expectations. If you don't, you can expect a really frustrated patient.
- I was sent to physical therapy for my ataxic gait. No amount of PT will improve paralysis without treatment. So, if I'm not improving and reporting that I'm getting WORSE, politely suggest that I see my doctor again. Don't wait until insurance denies further treatment.
- Oh, and don't get me started on not returning patient calls for an appointment, snail mailing documents instead of uploading them on the expensive portal the hospital administrator's tout (instead asking if I have a FAX), and confusing signage ... for people who can't really walk or stand and get fatigued EASILY!
For my readers who want an update, I'm doing better after three rounds of IVIG infusion therapy. Thank you to all of the thousands of blood donors who made this treatment possible. Thanks also go out to my insurance company who paid for this really expensive treatment. (If it works, they will pay, and I'm good with this.)
I started PT again, this time for my hands. While my walking has improved greatly, and I'm no longer falling routinely, I still struggle with my grasp, strength and typing. This is slowing down my ability to return to work. Yes, I could use Dragon, but not for everything. The most exciting aspect of this PT is that it is virtual therapy. More on this in a later post.
Next week, I'll start my final treatment in this initial plan. Then I'll see my doctor and we will discuss the progress and what is next.
One parting tip. This past Winter/Spring it was cold and (thankfully) wet. My hands and feet ached and were painful, as well as, super sensitive. The nerves were in a tizzy and they let me know it. Super soft socks and gloves made this bearable. As we approach a new winter, keep this solution in mind. I continue to add to my new store, because of the idea planted in my mind by my grey aloe infused socks and gloves. I wonder what color I'll try next!