MS the long way around
Last updated: February 2023
I was diagnosed with RRMS on January 13, 2009-- interestingly, also one of my brothers' birthday. I was in a Phase II clinical trial for Ocrelizumab from 09-11, and had the first two infusions by August of 2009. Before that, I spent 6 months poking myself with an Avonex needle and learning to cope with side effects the first two months.
I probably have had MS for about eight years, and was diagnosed at first with RA in 2007, summer. I took a lot of methotrexate when RA was my diagnosis, and all it seemed to have done is thin my hair. It took a bit more than weird aches and tripping to get a correct diagnosis. This was definitely a frustrating time.
Luckily, in Nov 2008 I hit Vertigo City after asking for a pain management referral, got a neurologist who dared to give me valium and meclizine for vertigo, and he got me a MRI. All his time, i was still teaching five college classes while limping to class with a cane.
I remember so clearly how he called me soon after the MRIs were taken, asked me to come in, and explained that the radiologist reading the MRI had panicked and called him, saying 'You have to get her back in!'. He was pretty sanguine, but also told me, "If you were my daughter, I would tell you to take this [MRI] disk and go to the emergency room at Barrow (in Phoenix) or go to San Diego." I looked at him and basically asked, "Really?" His contention, and I believed him, was that my little county could not get the team he thought it would take together in less than several months' time, whereas Barrow had everything in one place. He let me know he didn't think it was cancer, that maybe it could be MS, and oh, "you also have a disk protruding right... there." Elated I wasn't.
I went the next day with my husband and proceeded to have every bit as exciting and frustrating a diagnosis process as the TV show "House" presented. I believe I had seven doctors in several specialties trying to diagnose me - a neuroimmunologist, a neuroncologist, an infectious disease guy, a neurosurgeon, a rheumatologist, and at least two other neuros. Two wanted to biopsy my brain (um, no!), and luckily my hero and future MS doc held them off while I was tested for every conceivable disease. I swear.
In the end, after eight days I had one diskectomy in my neck, had given lots of blood, but went home for Xmas. I had to see them four weeks later, and two things happened - my neurosurgeon said the neck was looking good, and my hero-MS-doc gave me my official diagnosis. Sis, hubby, and myself were there. Thus began the real drama in life. And no, I didn't have Kubler-Ross' grieving process play out - my question to the neurologist who gave me the diagnosis was, "Ok. What can we do now?" Within a month, I was learning how to give myself shots at the beginning of a clinical trial. It is a good drug, the clinical trial one, I will say that. It certainly seems to have staved off much MAJOR damage so far!
In regular life I professed English (figure it out), though now work in education administration. I have a large family of four-legged ones, and a rather large human family, too. Texas is my home, to which I have recently returned after 19 years gone. I am grateful in the extreme for Barrow at St. Joseph's Hospital in Phoenix, and I didn't even mind the 350 mile round trip drive up there.
I will not reveal names, but let me say that my MS doctor was absolutely amazing, though no longer at Barrow. I hope to find someone similar now that I am back in San Antonio. Either way, I feel so much better just being in a place I can call HOME.
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