3:45 am. Typical it seems. The night I go to bed at a reasonable time, around 10pm, and bam, I'm fully awake five hours later. This has been going on for years. And often in a bed of sweat and chills. As recently as last week. Today, not so much. Maybe due to an alkalizing day yesterday. But I'm not in the clear. While my legs are not on fire there is a low simmer percolating throughout them. Fibromyalgia the doctor called it. "Goes with your MS". And neuropathy. Nerve pain. It all mixes for a nice medley of extreme invisible discomfort.
I find this all interesting as I review my medical records over the past three years. Some recent background: My diagnosing neurologist retired in 2010. I was referred to a new doctor. Recently I found out that my new neurologist has supposedly been treating me without knowing my medical history. According to their office, they can not locate my ten years of medical history nor have they ever seen them despite earlier acknowledgement that the neurologist new my case.
As I review these last three years of records I'm not sure who they are suppose to represent. The notes mention how well I am doing, how well I am sleeping and that I have had no exacerbations since the 1980's. I find this last point hilarious since I was not diagnosed until 2001. Not to mention my name is spelled wrong. There is no mention of the four weeks I spent in bed in 2012 and the numerous issues I've dealt with over the past few years. So, not only is my entire MS history gone on record, the files I do have from the last three years are erroneous.
There is also no mention of my throat and soreness in my neck that has plagued me these past few years. Nor my many questions about the possibility that my zoster virus is causing the soreness in my neck. I saw an ENT twice during this time. Everything checked out but with a history of chronic bronchitis and more, there is always need to be concerned when it comes to my throat area.
Around the final record comes mention of benign essential tremors. Since I started seeing this doctor I've been asking for help with these along with my increasingly bad neck spasms. She finally referred me to a new doctor. The only good move she's made to date.
As I'm looking at these erroneous reports, I realize that they have been faxed to my internist. This needs to be cleared up immediately. Two doctors working off wrong information. So more letter writing on my part. More phone calls on my dime. More things to think about at 3:45am
At one point my doctor said, "Well, you look great. And you said you felt great." Well, compared to ten years ago and not being able to walk or see unassisted, I am doing great. But they don't know my history. They have no idea what to compare me to. For three years they let me think they knew my case. They could have taken the time to read my blog. It's not like I'm hiding my story.