As we neared Amy’s official diagnosis date, I went from thinking she was dying of something horrible to being relieved she had multiple sclerosis to dreading that is what she had. If someone were to ask me about how the diagnosis process went, I would tell them “it was horrible”. We went from not knowing anything to being told it was MS, then being told it was NOT MS to finally being told it was Clinically Isolated Syndrome (CIS, which is the 1st stage of the disease progression). It was a relief, but only temporarily.
Seeking a common bond, I immediately reached out to someone I knew with the disease and she shared her story with me. It took the doctors twenty years to diagnose her, and at times she thought she was losing her mind and was dreaming up the symptoms MS causes. Turns out, we did not have it bad at all.
A friend of mine who is a doctor later told me I could have got the MRI that would have sped Amy’s diagnosis significantly for $300 cash. The trick is to tell the imaging center you do not have insurance. If only I would have known that sooner I would not have had to haul Amy to the ER for that scan.
In the end, it took our insurance company three months to approve paying for the scan her doctor ordered. We had Amy’s illness diagnosed via an unconventional route faster than insurance could approve the normal method.
Do not let insurance companies dictate the speed of your diagnosis.