Hey y'all!
This past year (2018) has been the hardest year of my life thus far when considering the worsening and onset of my many health issues. Though I still have a very long road ahead of me, today brought me such PEACE. Today was the second time I've seen a neurologist to rule out MS, the first time being three years ago upon experiencing similar symptoms. Hearing that I don't have this disease was well, indifferent, for a lack of a better word. Of course I am grateful, but hearing "we don't know what's wrong with you" for the THOUSANDTH time is beyond heartbreaking. The road of "I don't knows" is a lonely one full of darkness, depression, judgement, and complete lack of support.
But you guys, TODAY. Today my neurologist confirmed I do not have MS, and continued to dig deeper instead of sending me home. This has never happened! He spent over an hour assessing my many symptoms, and broke the news to me that he believes I have many underlying disorders that he is unsure I will ever be able to get diagnosed with. He prescribed me meds that other doctor's have refused to prescribe (due to my POTS, even though I have had success with them in the past) and was kind when I explained I did not want to try narcotics as a way to ease my pain. He apologized for not being able to give me relief or a diagnosis for whatever it is that seems to have ruined my quality of life, as far as my legs go. Truly, I will always be grateful for this one doctor who took the time to actually LISTEN. If he would have sent me home after looking over my billion scans I've had done, he wouldn't have been able to give me an actual diagnosis. I have officially been diagnosed not only with Chronic Pain Syndrome, but I have a "soft" diagnosis of Fibromyalgia - soft meaning we are going to try a hell of a lot of meds as a treatment before we officially diagnose to be sure, but my tender point scale today was 22. FINALLY. A doctor caught my symptoms during an actual flare.
As many people know, Fibro is usually the diagnosis of last resort. For me, I honestly feel I am there. I have tried EVERYTHING. I have lost a large part of my life, that being school and work. I have had to quit PT. Injections, Steroids, anti-inflammatories, pain meds, acupuncture...etc. I have left jobs that I loved due to pain and fatigue and the fact I no longer felt safe to drive. The Doc explained to me that he knows for a fact I don't "just" have these two disorders, and that I cannot stop searching until I find answers. He reassured me that my hip and leg weakness is NOT normal and that even though I have Fibromyalgia, there is more to my case and to not give up. As for now, I have rested today, comforted by the fact I finally have a doctor who truly believes and listens to me. I rested knowing tomorrow I get to try SEVEN more pills in hopes to start treatment (18 meds daily now - woo!). I am just so immensely grateful.
The road of I don't knows has literally had me at the end of my rope. I was not at all hopeful before my appointment today either. But please people, if you are struggling, KEEP HANGING IN THERE. Keep searching for answers. Reach out to those who support you and forget about those who don't. Don't stop even if doctor after doctor and test after test come up negative with no relief. Pain is not normal. And you are not crazy. I send my utmost respect and love to my fellow Spoonies. Thank you all for the support along the way. Xoxo!
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| Fragile Light 2018 created by Adam Martinakis |
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