Feel the burn...

Found out today that I was taking double the dose of Gabapentin that my Neury wanted me to, and it still wasn't doing the trick.

So, medication numero 7 has just been added to my daily routine. I was feeling so disheartened by my symptoms. Dizziness, loss of coordination, burning and pain. And, knowing I couldn't see my Neury for FIVE MONTHS I was feeling dejected and defeated.

After speaking with a friend today I decided that I deserved better care, and needed an expert in Multiple Sclerosis treating me. So I opened my laptop this afternoon, and within a couple of minutes found Dr. Charles Smith, a nationally renowned expert in MS at Scripps in San Diego, CA. And, he will see me in two weeks, not five months!

Truly in the fog and frustration of this whole experience I feel so blessed right now. I must recognize the nudge I felt in Dr. Smith's direction. Sub-optimal care is not acceptable when you are dealing with a diagnosis like this, and now, I won't only get ok care, I will receive expert care.

So, two more weeks of burning and pain in my feet. Two more weeks of dizziness, and clumsiness at the gym. Two more weeks of chest and hip pain. He may not be able to solve it, but he will have a plan for my care which is so much more than I have now.

I also found out there is a name for the crazy jerky movements I make when I'm asleep. I found it in a book from the library about MS. The movements are called Periodic Limb Movement Disorder, they only happen during sleep, and you usually don't know you are doing it, but partners usually tell you about it. It described in perfection what has been happening. DH woke me last night and said did you notice that. Notice what? So, as I was falling back to sleep, I tried to pay attention, and sure enough as I started to fall back to sleep, my arm jerked, my leg jerked, and my foot jerked. I guess I'm a real JERK!! Snort, snort....

The long and short of it, learned something new today, and YAY ME, won the Specialist Provider lottery. 

Jenn