Welcome to DXMS!

Welcome to DiagnosisMS.com!

I was diagnosed with Relapsing-Remitting Multiple Sclerosis December 10, 2008 and have since found myself on a mission to understand as much as humanly possible about the disease, its cause, its symptoms, and the mechanics of treatment for it. Some time ago I began to analyze Multiple Sclerosis and my personal experiences with the disease. My personal story will traverse multiple posts, but it is not an uncommon one for those of us with the disease.

Allow me to introduce myself with a short synopsis.

I am Sara – blissfully married with no children (just mischievous cats), a full time demanding career in technology, a love for art, a love for the country I grew up in and the city where I now live, an endless stack of books at my bedside, and a sense of humor in spite of everything.

With a heavy family history of MS I recognized symptoms in myself for several years, but my concerns were waved away by doctors. Eventually I underwent an MRI after experiencing prolonged muscle spasms and 4 significant lesions (2 enhancing) were visible on my brain. Washing his hands of me, the doctor sent me immediately to a neurologist. Having the exceptional luck of experiencing my first serious MS attack while in the MRI machine, I found myself unable to write or speak clearly caused by partial paralysis in the right side of my face and in my right arm and hand. Communication was not my strong suit for a couple of months. Chemistry and communication with my first neurologist was less than optimal.  Our doctor/patient relationship was short lived and I quickly found myself under the care of another doctor. The new neurologist successfully started a course of treatment with Rebif and several muscle relaxers as my nerves and muscles became mutinous as soon as healing began.

Treatment on Rebif lasted for awhile, but I continued to experience relapses and the interferon was on a mission of its own to destroy my liver. The day I ceased Rebif treatment, my liver enzyme levels were about 7 times the high limit of normal. Several months passed during which my liver very slowly began to heal and I battled fiercely with my insurance provider to obtain coverage for Gilenya (fingolimod) – the first oral medication for multiple sclerosis. Following dozens of phone calls and almost as many threats I finally had the privilege of becoming a Gilenya pioneer. To date, my current neurologist has only 2 patients using Gilenya (including me).

Many of my posts on this blog will focus on Gilenya, but with a multitude of medications moving through the FDA pipeline I hope that even more effective treatments will become available.  For those of you who have had good, bad, or interesting experiences with other treatments (including alternative therapies) please contact me if you would like to share your story!

That’s my nutshell. We will soon crack it open and I will write in-depth on the (painful) process of obtaining approval for a medication like Gilenya which labeled me an unprofitable insurance client.  I’ll tell you about Rebif, about Solumedrol, about Gilenya, and when it comes to things I haven’t tried yet I will do my best to cut through to the facts and provide you with the clearest information obtainable. It is often impossible to find out what you need to know about any facet of multiple sclerosis or its treatments without studying many sources of information – this is one of the most frustrating aspects of the diagnosis.

A diagnosis of Multiple Sclerosis can be overwhelming, even devastating. The truth can be hard to come by, but I will do my best to find it.

 

Would you like to share your story?

One thought on “Welcome to DXMS!

  1. My name is Karen, pronounced Car-In, as “car in the driveway” or “car in the garage”. My father, who had been having symptoms for 20 years, was diagnosed with MS in the late 80’s just after MRIs came out. About the same time, I started having symptoms. For those first ten years, there were lots of reasonable excuses for the fatigue, tingling and numbness. I was a single mom and had a job installing light fixtures to supplement my freelance graphic design income. I didn’t consider MS, but my mom did. Life got better – a new husband, two more kids. (Yes, pregnancy puts MS on hold, and I’d love a shot of those happy hormones again.) When the symptoms got so I couldn’t ignore the onslaught, I went to an endocrinologist. After ruling out thyroid issues, getting my elevated cholesterol and blood sugar straightened out, he wrote my symptoms off as depression (or maybe hypochondria). I knew I wasn’t depressed, and depression doesn’t cause numb hands and feet anyway.
    Then came the day just after Christmas 2003. I woke up not only befuddled with exhaustion, but I had a supreme case of vertigo and couldn’t walk normally. As I lurched against the full length mirror an image of my father and his odd MS gait looked back at me. It was a few weeks before the neurologist and an MRI confirmed one lesion consistent with MS. Although my neurologist and I both knew it was MS, he said he wouldn’t prescribe any of the ABCs until I had another lesion to make it “multiple”. I didn’t respond well to steroids. One jacked with my blood sugar the other put me on the verge of a psychotic break, and my symptoms were not resolving. After a few months of wobbling and the world threatening to rotate 90 degrees leaving me face down without warning, and lots of web crawling looking for answers, I persuaded my rather progressive doctor into prescribing LDN (low dose naltrexone). My neurologist deemed it snake oil, and would have no part in that potential remedy. So I remained Karen of the SS (single sclerosis) for the next five years. During that time the LDN proved helpful without any adverse reactions other than insomnia and reflux which resolved with time. I slept more soundly, the fatigue backed off, and the brain fog began clearing. My gait improved within a month and was normal for most of the day. All was well, unless I hung out in the sun too long and then I would develop my six pack stagger and pending narcolepsy. Despite the fact I didn’t have Swiss cheese for brains yet, my MS progressed from living in an ant farm, inadvertently practicing my knife throwing skills and having my eyes checked just in case my glasses were the problem … to a time when my bladder muscles started taking vacations, a boa constrictor took up residency around my rib cage, shingles reared it ugly head, and other bizarre autoimmune disorders came to visit.
    In 2005 Hurricane Katrina blew through New Orleans and my neurologist jumped out of a hotel window. In 2008, ten days after stopping LDN when my script lapsed and three days before Hurricane Gustav arrived, I woke up in the middle of the night and took a warm bath to get rid of the itchies. I was unable to dry myself with a towel (right hand/arm on strike) or smoke, curse and talk intelligibly (right side of face/tongue not responding to brain commands). The stroke like symptoms came with my only trip to the emergency room for MS, a second lesion, a new neurologist and the long expected confirmation that it really was MS. Relieved it wasn’t a stroke, and realizing MS can be the lesser of two evils, I spent six months in physical and speech therapy that got rid of my “German” accent and brought my penmanship on par with a 1st grader. I still somewhat leer instead of smile, and I’ve resigned myself to a constantly changing signature that would never match my old one. I tried Copaxone a few years ago, and last year I stopped LDN to try Tecfidera, but both brought on more constant MS symptoms of fatigue, spasticity and discomfort I didn’t want or need.
    Now I’m back on just LDN and my last MRI shows that my MS has been more active without it. My follow up neurologist appointment is tomorrow, maybe I’ll ask how many lesions. I’m confident anything new is the reason behind increasing symptoms on my left side. The MRI a few years ago surprised me with a third lesion that came with no new symptoms. If this one is a “significant” change, I’m sure she wouldn’t have left me hanging for six months. I was surprised that my neurologist initiated my return to LDN as she keeps trying to treat my MS with disease modifying therapies that work for RRMS. From what I read, my low lesion load and increasing MS symptoms for over 20 years points to PMS, like my dad, and there aren’t any meds that keep progression at bay.
    I keep moving and doing despite my body acting like it can’t from time to time. I figure if I could do it yesterday, I can still do it today. The best way of coping with MS is the realization that symptoms don’t have to be permanent, just a temporary brain fart. Some days are more gaseous than others, but there’s always room for improvement. I’ve gotten pretty good at ignoring my MS. It is there one minute and gone the next, with no medical reason other than the lesions on my brain, and no pharmacopeia that will make it stay away. Most of my symptoms usually resolve with a good night’s sleep or two. Of course like a class of Kindergarteners, one symptom or another is always acting up. Summers make my symptoms more active. I just can’t take the heat. I’m grateful for the room sized freezer at the wholesale store. It works so much better than my fan!
    I’m fortunate that I’m still ambulatory and can once again ride my bike, although I must admit I occasionally have wheel chair envy. If I ever need one I’ll get all the bells and whistles, and pimp my ride like a Mardi Gras float. I keep a cane in the car just in case I have one of those low energy, unbalanced moments. I’ve finally conquered my aversion to cell phones, so I’m not worried about dealing with “what ifs.” I laugh to myself when my speech slurs or I tell my kids to put their dirty clothes in the dishwasher. I play scrabble, Candy Crush or dominoes to keep my brain clear of that impending fog. I relax with a good book, eat healthy and stay cool as much as I can. Most of all, I ignore my MS unless someone points out that I’m walking funny. Then I try to explain, but they don’t usually get it because I look just fine. It’s not like the spots from my vitiligo which they can see, or the gray hair and wrinkles that prove I’m older than I feel. So after explaining about MS, I don’t care if they still think I’m drunk, I know I’ll pass the breathalyzer with flying colors, just like every other test I’ve taken to figure out why I’m … spin the wheel for the MS symptom of the day …
    It’s good to know that MS won’t kill me, just frustrate me. A word to the wise, “That which doesn’t kill you, makes you stronger.” I’m more easygoing and don’t take things as seriously as I used to. The perfectionism that used to rule my world is no longer a concern. It’s easier for me to ask for help when I need it, and I’m so much more appreciative of people who hold doors open or drive me where I need to go whether or not I can do it myself today. With MS, letting it go, a hearty laugh, and if all else fails a nap, always makes the difference between a good and bad day. It’s something I’m helping my son with, as his hand is going numb and his vision is acting wonky. There is no medical reason yet except the damn family predisposition to MS. He is depressed and on meds to help with his anxiety, but it breaks my heart that antidepressants won’t stop that damn tingling. It’s hard to know what to do, but at least I understand and can support him on his journey.

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