Keep Running and Don’t Look Back!

I was diagnosed with relapsing remitting in 1996. It was quite a shock. I remember driving home that evening knowing I had hit absolute bottom. Horrible dark and lonely feeling. I heard Vanessa Williams singing “What Child Is This” on the radio, and somehow knew at that very moment things would work out.

After grappling with different neuros for 3-4 years I found a neuro and clinic that was willing to tinker, tailor and try different treatments. Interferons did not seem to help. In 2000 I started a two year course of Novantrone that stopped my MS cold. Since then I have been on interferons and Cellcept dual therapy. Recently I went to monotherapy on Cellcept. i have had no serious relapses in twelve years, with the exception of some visual effects which ocurred on a foolish four week hiatus from the Cellcept. Heavy steroid use early on destroyed my shoulder joint and lead to a titanium replacement. Do not know if or when the other joints will poop out but i guess that will just be another funny story to tell. Shoulders can be replaced but gray matter can’t – find a neuro with a zero tolerance for flareups and the accumulating disability they bring.

Once I got over the initial shock I resolved to keep moving forward no matter what and to keep a positive frame of mind. On the surface of things I am quite pleased with where I am. But I do live with the apprehension that this course of treatment will eventually play out. So I keep running knowing the disease is somewhere behind me. I never look back over my shoulder and keep running.

I initially shared my condition with coworkers but found that it lead to a different perception in the workplace. I no longer share with coworkers. My kids do not know yet.

Since diagnosis I have built a family with three children and accomplished some success in the practice of law. My success is due to finding the right clinic and right group of neuros, informing myself about treatments and new developments, not taking no for an answer, and being willing to try off-label uses of drugs on the market for other conditions. You need an odd and sometimes dark sense of humor because sometimes you feel you hit bottom, and only an odd ability to laugh at your messed up situation can reset your state of mind.

All of you out there are close in my thoughts and prayers. Sometimes this gets difficult, i know. But just keep moving forward and seek out the little, unremarkable things in life that can fill you with so much joy you feel it is running over. There has never been a better time in history to have this disease!

You cann do this. Now get moving!

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Comments

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  • Kim Dolce moderator
    5 years ago

    Locutus,

    I appreciate the detail in which you’ve described your symptoms and treatments, and I’m sure I am not alone in that. Of particular note was your experience with a sinus infection touching off a neuropathic sensation. The same happened to me over the past year; an initial bout of maxillary sinusitis seemed to rebound every 30 days despite rounds of antibiotics. A sinus CT scan one year later showed no problems, so my ENT suggested it was neuropathic pain I was feeling in my head, face, and throat. That felt right to me. I’m not doing anything about it, and have yet to see my neuro. But I will discuss it with her.

    I hope your therapy regimen will continue to keep your flares in check.

    Kim

  • Locutus author
    5 years ago

    Hello Kim – was your pain from the transgemic (sp?) nerve that runs from the ear across your face? I get that sometimes as well -also related to upper respiratory infections. I never travel overseas without a bag full of Augmenten. You are sitting there doing nothing and you get a pain (not a shock) across the upper side of your face. I hear this is a frequent symptom.

    I know when i am getting the flu, sometimes 12 hrs or so in advance, because my hands get a little numb. And sinus infection causes alarming dysthesia sensation, always touched off by touching a place just above and inside the elbow on the right arm. Logging symptoms helped me to see patterns.

    Lately i get the strangest sensations on the top of my left forearm that feels like small drops of cool water.

    What a funny bundle of nerves!

    Have a great 4th of July!

  • Locutus author
    5 years ago

    This is Locutus again – two points I forgot to mention:

    Fatigue – Have a plan to deal with fatigue and keeping your mind clear. Start now and do not wait to deal with fatigue or “cloudy mind” which might creep up later. I take 100-200mg modafinil (provigil) a day. Modafinil is a generic which costs $300-700 for a 60-90 day supply without insurance in the US.

    Symptoms Log – Keep a symptom log. Nothing fancy, maybe a running log/note on your smartphone or a small notebook in a drawer at work or home. Logging helps you build a bigger picture of what is going on, or more importantly, what is NOT going on. It can also help you track and correlate effects of heat, environment, pollen, animal allergies, non-MS medications, stress, illnesses, etc. Logging helped me to identify what I had thought was “another damn MS symptom to live with” was actually a common type of migrane with visual effects. Logging also helped me to identify an extremely painful dysthesia (think dog shock collar on your arm with no warning at all!) on my right arm that occured for apparently no reason. Logging helped me and my neuro to identify sinus infections as an underlying cause of the dysthesia because they “fired up” my immune system in a way that is different from my immune system response to other illnesses. So now I pay particular attention to sinus infections and stay ahead of them.

    My Cellcept dosage is 2000mg a day, the same dose someone with an organ transplant would take. (This will be helpful when I get that brain transplant to repair all the damage caused by law school.) When doctors find out I am taking Cellcept, the first question they ask is if I have RA (a sister disease of MS). This is because Cellcept is apparently used for treatment of RA. Cellcept is a well known generic drug which costs about $800 a month without insurance in the US.

    One more point, I know that, so far my MS may not be as aggressive as others on this forum. I also know that meds which work for me may not work as well for everyone else. I am just sharing what I know and want to learn what you have learned. I understand what some of you may be feeling on any given day and would not be offended one bit if you told me to knock off the “happy talk” and just listen.

    I am pretty happy though.

    “Two fools dancing on the hands of time, the Fool and me.”

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