Still chasing a diagnosis

Hi to all,

I am about 16 years into living with undiagnosed MS…I think. And my PCP thinks. Other Drs think so when they look at my medical history and stats. But my MRI showed “non specific white matter areas” so no one will give the diagnosis. Spinal tap was negative. Blood work is all over the place but chronic low vitamin D, high inflammation markers, some other abnormal stats off and on.

Fortunately my PCP will treat symptoms and help me all she can. She’s as frustrated as I am.

Here's the thing

But here’s the thing-now I’m 64 years old. I was in my late 40s when it started. They call it Fibromyalgia but my neuro disagreed. He thought MS but back then I didn’t fit the criteria for diagnosis. Then he moved away and my PCP has sent me to a Rheumatologist looking for Lupus, Lyme or any number of things, only to be shot down time and again.

Experiencing a bad flare

I’m having a bad flare now, complete with walking difficulty, balance is terrible, numbness on one side of face, fatigue, blurry vision and dry eye, ankles swelling, bad chronic pain in legs and forearms, Raynauds syndrome in hands and feet, heat intolerance, heart palpitations and fuzzy thinking. I work for myself but having difficulty keeping up with my business.

Not sure where to go from here

Do I chase another round of testing and referrals to specialists? I’m still paying off the bills from all the previous labs and imaging tests that my crappy insurance put towards the deductibles.
I’m not paying for more inconclusive expensive tests. And if they do finally give me the diagnosis, should I start taking heavy duty drugs when I’ve made it this long without them? A bit more help with pain and walking would be nice. Gabapentin, Cymbalta and NSAIDs are all out due to reactions. Marijuana makes me sleepy and dizzy. Supervised narcotic pain meds worked great before we all got labeled as drug addicts. So what’s the point of chasing the diagnosis now?

Thanks if you read all this. MS groups are the ones I trust and with whom I identify.

Betts

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