If things are “normal” then why am I not “normal”?

It’s frustrating when things are “normal” yet you know they’re not “normal”!

My EMG/NCS was normal.  My muscle enzymes are normal.  All of my MRI’s (head, spine, thigh) have all been normal. Even my sleep study was normal.

Yet I have fine motor control/dexterity/muscle issues.  All of these tests (with the exception of the sleep study) were done to find out the cause.

It’s not numbness or tingling like my Rheumatologist likes to describe it as (which is the reason he wanted me to have a skin biopsy), so it’s not small fiber neuropathy (both my neurologist and the neurologist that oversaw my muscle biopsy both agree me on that and we all decided not to do the skin biopsy because it would just come back normal).

It’s my pincer grasp and it’s when I move my fingers in a downward motion (like typing, gripping or pretty much any other time I try to use fine motor skills.

And it’s muscle weakness.  Brushing my teeth or putting my hair in a ponytail should not feel like I just bench-pressed my max.  I should not have difficulty stepping up onto a curb.

Yet all of the tests that they do, including numerous lab tests – some multiple times to double check, come back “normal.”

But this is most definitely not “normal.”

I’m only 37.  Last year I participated in a weekly 75 minute stretch/strength/contemporary dance class with high school girls and could keep up.  There’s no way I could do that now.  Last fall I helped build a stone patio in our backyard that necessitated carrying 40 pound cement patio pavers from one side of my yard where they’d been piled to the patio location, drop it, check to see if it was level, and often pick it back up again, adjust the layer underneath and place it again.  I simply could not have done that with the muscle weakness that I have now.

So not only is it not normal for my age – it’s not normal for ME.  I’ve been stronger than this.  I’ve been able to do things relatively recently that I can’t do now.

And that is exactly why it’s so very frustrating to hear the cheerful voice on the other end of the phone or at the computer in the exam room report to you “it’s all normal” in a tone that says “you should be so happy…it’s all normal, nothing to worry about…solves all your problems and you can now move one and not worry about that anymore.”

Having normal results come back doesn’t stop the symptoms.  If my muscle biopsy comes back (in 4-8 weeks…ugh!) “normal,” it won’t mean that my muscles will hear those results and decide to go back to the way they were.

Instead, it means that there’s more self-doubt (“Am I really experiencing these things the way I think I am?” “Am I communicating them effectively to my doctors?” “Am I asking for help from the right people?”), and more lack of evidence for the insurance companies (which my Rheumatologist is obviously waiting for before ordering the new treatment that he’s been talking about since October and waiting to order this whole time as one test led to another) and, maybe most frustratingly, more doctors saying “well, you shouldn’t be feeling that way according to all these test results.”

It’s not that I WANT anything to be wrong with me…I’d love to be healthy and normal and go about my life.  But something is going on (even the Rheumatologist was quick to point that out the last time he gave me a “normal” lab report and I explained how obviously I wasn’t “normal” – my sed rate and antibodies prove that autoimmune disease are happening in my body, so I know he knows that something IS going on at least), and if something is going on, I just want to know what the heck it is!

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