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.
Hello world and all of you amazing people reading this right now! Unfortunately, yes I’m feeling more than restless, and hopeless for our whole health care system. Although, I did work in the healthcare field and nursing school was so close I was almost done. Now, I am here back to square one.
While researching for my book i came across some very interesting facts. Here are some i thought were mostly interesting:
1873- M.S. is known as a disease
1878-Myelin was discovered
1928-oligodendrocytes were discovered
1946 the National M.S. Society was founded by Sylvia Lawry
1969- was the first study to prove there mat be a therapy or medication that may help make flare ups go away faster, now called “steroids”
1960’s the TWO MAIN “THEORIES”, of how M.S. may come from WHICH, ARE STILL BEING RESEARCHED TODAY!!!!
I could go on and on and on…… that is what scares me. The new Neurologist I have which, is closer to home wants to put me on Tecfidera. This is the pill that has only been around since 2013 that is giving people PML ( progressive multifocal leukoencephalopathy ). This is a rare brain disease, caner which usually causes death pretty quick. It it said to come from the JC Virus (John Cunningham), which can be dormant is some people and you would never know it and it will also lower your white blood cells which clearly, lowers your immunity. If you test negative for the JC virus than they say you should be OK. NOPE!!!
I am going to decline this medication and just not take any I think. The one medication I did try was Copaxone which, made me absolutely miserable and then I became allergic after I switched from the daily injections to the three times a week injections. Most people I know that have MS who don’t take medication for it and have before, feel like they’re at their best now. I think I’m not going to take my chances and take any medication, and not feel worse because, I will most likely get some kind of side effect most people do etc…. I don’t feel fantastic right now but, I could be a hell of a lot worse!!!! I will let nature take its course on this one but, I still have more work to do and more tests to be taken on goes the journey. The journey to see who can diagnosis me faster; “MYSELF VS.”HEALTH CARE SYSTEM”.
I hope everyone stays safe and takes care of themselves out there because, the only person you can really trust is yourself. Only YOU know how you feel, and it’s up to YOU to love yourself and U know the world needs you here.