Netflix has a new show called "Diagnosis".
The description of Season 1, Episode 1 is "Detective Work: The once-athletic Angel, 23, suffers from episodes of muscle pain so severe she often can't move. As she begins a nursing career, she needs answers."
Given the title of the blog I'm posting on, it shouldn't surprise anyone that her disease is diagnosed as CPT2 deficiency.
First, the fact that she spent nearly a decade trying to figure out her diagnosis means that I personally consider this blog to have failed her. The idea of posting my experiences was to help people like her (seeking diagnosis) by giving them something to discuss with their doctor. It also means that the super-helpful Facebook FOD group and the great, more specific "What you can do despite CPT2" Facebook group have failed her. They are great resources, but somehow didn't place high enough in search results for searches done for the key symptoms of CPT2 episodes. I personally think the quickest answers come from the Google Group for CPT2, but that too didn't help. As much as the CPT2 community is a strong one, we need to do much better at getting listed in response to searches for symptoms of CPT2 attacks.
So, here is a quick search-engine-friendly, somewhat incomplete list of symptoms (note that I do not have advertising on this blog and I'm not trying to monetize any improved search engine results, I just want people with CPT2 to be able to find the resources they need).
Coca-Cola or Coke colored urine, dark pee, dark red or other evidence of blood in the urine (since many quick tests just test for iron in the urine and call it "blood", somebody with muscle fibers in their urine will test positive for blood in the urine if the test just looks for iron).
Muscle weakness, exercise makes my legs hurt so much I can't bend them, I suddenly get very stiff and painful muscles.
When I'm stressed out, I get muscle pain. When I don't sleep enough, my muscles hurt. When I eat meals with too much fat, my muscles ache. When I don't eat enough, I can't walk very far before I get muscle failure.
I got propofol infusion syndrome PIS or hyperthermia from an anesthetic that act on fatty acid.
When I tried Atkins, Paleo, low carb, no carb diet, my muscles hurt a lot.
My doctor doesn't know what's wrong with me, but my CK is sometimes really high.
My CK was over 10,000.
My CK was over 20,000
My CK was over 30,000
My CK was over 40,000
My CK was over 50,000
My CK was over 60,000
My CK was over 70,000
My CK was over 80,000
My CK was over 90,000
My CK was over 100,000
I got rhabdomyolysis.
If these help one person find this blog and then go on to the community groups I linked at the top, I'll call it a success.
Post a Comment