My Challenges With Healthcare Accessibility

I was diagnosed with relapse remitting (RRMS) in July 2007. At the time of diagnosis, I was still able to work, drive, and be independent for the most part, although I had periods of debilitation during exacerbations.

As the years went by, the disease’s progression was snowballing and my mobility was the hardest hit, along with transitioning into secondary progressive multiple sclerosis (SPMS). At this juncture, I’m sedentary and my symptoms are vast. I now also suffer from MS seizures, sensory issues, my fingers are curled, arms contracted. I have chronic muscle weakness, upper and lower limb pain, spasticity, and more. I live a rather difficult life with MS.

Unable to get important medical tests

The pro, as it relates to insurance, is that (thus far) my health insurance has pretty much supported my needs. It affords me the ability to have the necessary doctor’s visits, assistive devices, symptom management drugs, DMTs (disease management treatment), home health, caregiving services, and so on.

However, I have had some cons to counter the pro. I have sometimes found it difficult – or flat-out impossible – as a non-mobile person to access medical tests and procedures that are important to my health. Here are two concerning examples.

Too much pain to lay flat for an MRI

The first is when my neurologist ordered an MRI. Where formerly there was no problem with undergoing this scan, the course of my disease has created a problem. It’s more than just very uncomfortable for me to lie flat on my back; it’s incredibly painful. The pain from the spasticity causes my muscles in my arm and shoulder to begin jumping, which leads to tremors – and the scan requires that you lie completely still.

I cannot control all of the involuntary jerking and spasms my body does. The MRI was an epic fail, and I’ve yet to have one. Hence, the question remains, how many more lesions and/or scars are along my spine or in my brain or from years ago?

Doctors don't have the equipment I need

The second example is when I’d been experiencing severe abdominal pain. After an ‘abnormal’ ultrasound showed abnormalities, my doctor advised me to go to the ER. The index of a specific blood test ordered was dangerously elevated and indicated cervical cancer. The procedure required to confirm said diagnosis was not payable as an emergency nor outpatient procedure, but rather as an in-office gynecological procedure. I was released and ordered to make a visit with a gynecologist asap.

Here enters the issue for me: no gynecologist offices have the equipment (i.e. a hoyer lift) to get me from my chair to the table. And I wouldn’t be able to lay on it flat anyway. So I remain in limbo with getting that procedure, as of my writing this. I have to try not to stress, lest it send my MS into overdrive.

A never-ending fight

In conclusion, there has been no confirmation, resolution, or conclusion as of my writing this. Just more to use my ‘MS voice’ about. It seems that raising awareness as a patient and fighting for rights as a disabled person in an ‘able-d’ world is never-ending.

Editor’s Note: We are extremely saddened to say that on December 2nd, 2024, Dianne Scott passed away. Dianne’s advocacy efforts and writing continue to reach many. She will be deeply missed.