No MS'n Around (www.NoMSnAround.org) We're not just a bike team - we're all about spreading awareness, being a support network & updating you on the latest news about MS. We got married on Feb. 21, 2009 and our 1st son arrived early on Feb. 21, 2010 (yes! on our 1st wedding anniversary!)
I have 3 sons: obviously, one of them is about to turn 6 yrs old on Feb. 21st; the second one is only 4 yrs ol
d; and the third is only 2-1/2 months old! Although it is very hard being a mommy to 3 boys under the age of 6 yrs old, my sons are my medicine. They are my greatest accomplishment and I thank God every day that he allowed me the opportunity to be a mother. I also thank my husband as without him, having children would not have been possible ;)
Along with MS, I have also been diagnosed with:
-- Trigeminal Neuralgia,
-- Occipital Neuralgia,
-- Adrenal Insufficiency,
-- Hypothyroidism,
-- Chronic Migraines, and
-- Mast Cell Activation Disorder (MCAD)
I live on Long Island. but used to live in New York City in an apartment building 3 short blocks from where I worked as an attorney up until April 2008. I took off the 1st week of April to go for all the MRIs, Evoked Potentials, and Spinal Tap and... I never went back to work. My symptoms came on fast, one after another. I initially went on Short Term Disability, then after 8 weeks I was told I needed to apply for Long Term Disability. Then, months later, I got on Social Security. And, even though I'm an attorney (I still am an attorney - just not practicing now) and worked for insurance companies and know how to read & understand insurance policies, claims, appeals, etc., being sick, going to doctors all the time and then having to deal with this insurance stuff is HARD! It's like a full-time job keeping up with everything. So, although I am an attorney, my health (and being a mom) is my new job. As far as medications, I have been on Copaxone, Tysabri and now Rituxan, which I use off-label as it is not FDA approved for MS. However, Rituxan has been around for years. It's predominantly used for cancer, leukemia & rheumatoid arthritis. However, years ago, doctors found that the Rituxan also stave off MS progression by altering the immune system & wiping out all the B cells. The good news is that it is a very, effective, potent medication that works. It consists of a 6-8 hour infusion in a hospital or infusion center only 4x / year. The bad news is that it costs over $80,000 / dose and it will never be FDA approved for MS as it lost it's patent during Phase III trials. So, the company has to change the medication ever so slightly and change the name and start all over with the Phase I, II & III trails in order to get FDA approval. So, why am I on Rituxan instead of the Interferons (Avonex, Betaseron & Rebif) or the new pills like Gileniya or Aubagio???? Well, I've somehow developed an allergy to IViG and some ingredient in Tysabri (my allergists / immunologists have yet to determine the exact ingredient that I am reacting to) and get very sick. I've also developed an allergy to Aspirin & all NSAIDs. Needless to say, I have what you call a "Drug Sensitivity" issue and choosing medications for me to take for all of my various conditions is somewhat tricky. And, given that Gilenya & Aubagio are so very new, and not a lot of long-term effects of such medications have not been conducted yet, my MS doctors and I felt it was best I go on a medication that has been around for a long time (i.e. Rituxan). In the meantime, I still have some allergic-type reactions to the Rituxan. Therefore, I have to get the 6-8 hour infusion of the Rituxan in the hospital (as opposed to a regular infusion center) and it must be administered by an Allergist / Immunologist (not a MS-specialist).
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