This blog is one of the most important, personal blog’s I have written to date. I received my biopsy results today from my Comprehensive Neurologist. This disease is so rare my PCP didn’t know what it was, and the chances of me getting this disease are so rare due to my age, sex, race etc….. The chances are less than 1% (for me). Life is just kicking my ass right now. I honestly believe I have taken my MS diagnosis very well, but sometimes we all have our breakdowns. MY TURN!!!
My diagnosis makes perfect sense and I feel relieved, and extremely scared, considering what the “underlying disease” that caused this, is. So my diagnosis is: AXONAL SMALL CUTANEOUS SENSORY AXONS CAUSED BY SMALL FIBER NEURPATHY OF THE PERHIPREAL NERVOUS SYSTEM!!! They found my in my biopsy, which was taken from my lower left ankle, “marked reduction of innervation of the epidermis and of dermal structures such as; glands, hair follicles and blood vessels. This explains everything (besides MS) that I have going through for the past 6 years of tests, and I am pretty sure I have had it since high school.
When I was thinking about the title for this was because; I do NOT want to take any MS medications. I am pretty sure I will refuse them because they ALL make you feel worse than the disease does!!! Good thing I haven’t taken any because it most likely would not have helped me get the correct diagnosis. By letting “nature take its course,” is (in my eyes), not taking any meds, not going to see any Neurologist’s or specialists and what ever happens was meant to happen. Now I receive this news and I am all flustered and emotional. I keep telling myself that it’s great I finally know the TRUTH other than the MS. My MS Neurologist at MGH was exactly spot on she told me my symptoms, not all of them, but they didn’t match up with MS she knew I had some kind of connective tissue disease or/and small fiber neuropathy. I think I will stick with my Doctor’s in Boston because this disease is so hard to diagnose I don’t think anyone’s else would have found it and figured it out!
Do you remember as a child, how your always wondering what you will be when you grow up, who you will marry, have babies, what you will look like and where you will live etc…. Not once did I think at age 31 I would be so sick and unhealthy. I never thought this would be my life, my reality, it seems like I am in a sad movie about the “sick girl,” who just kept getting sicker until….. I am usually always happy, sweet, caring, which I am, but sometimes we all need to let go sometimes and SCREAM!!!!
No matter what happens in life you MUST always pick your-self back up, because you are the ONLY one who can your-self up, instead of lying there like a coward. BE A SURVIVOR, BE A WARRIOR, BE YOU AND LOVE YOUR-SELF AND EVERYTHING WE SHARE OUR MOTHER EARTH WITH. I consistently tell myself, it could be WORSE, it can get worse at any time so I must enjoy today, right now and let go of my past worries and not to worry about tomorrow because, nobody knows what tomorrow could bring.