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It Would’ve Been Easy

September 7, 2009

I am a person who always looks for the good side of any situation.  I am finding it a bit more challenging to find the good side to things these days, but it’s not impossible.   In the last couple of years, my former Relapsing and Remitting condition changed to Secondary Progressive and the daily challenge has become harder than I ever imagined it would be. I still have to think there must be good sides to find somewhere;  it’s the only way I can stay positive.

My RRMS case was very mild, I only had two episodes in the 16 or so years before SPMS began to develop, the first episode in November, 1989, and the relapse five years later.  Once that initial episode had cleared, my life returned to normal. I raised my kids, built my business, made a new single life for myself after divorcing, all the while expecting the MS to continue as it had, never expecting it to change significantly.  Although the specter of threatened relapse was always there, I had returned completely to normal after both episodes so I wasn’t very worried. It’s my understanding now that what I am experiencing is a common transition that happens in women with RRMS when their hormones start to wane. Apparently, the loss of hormones somehow affects the MS process in the body.  If I had known that, if I had read that, if one of my doctors had told me that years ago, I would have structured my life differently and some things would have been easier today.  But that’s not the way it is, so now I find myself trying to find the good side of the present situation and a positive direction in which to move forward…hmmm.

I’ve been thinking a lot about my first episode.  I was 34 years old, a full-time mom with a husband and 2 small children at home, 8 months and 4 years old.  It began with sudden, bizarre muscle spasms while we were walking along in the zoo.  In the ER, after examining me and taking some tests which showed nothing abnormal other than the odd periodic muscle spasms, the doctor gave me a prescription for a central nervous system depressant for the spasms and told me to see a neurologist. (The ER doc prescribed Robaxin750, which helped; I still take it and it still helps.)  Back then, none of the doctors I saw had anything to offer for treating MS. They could treat some acute symptoms with steroids but there were no drugs on the market for treating the disease. 

For a month, maybe a little more, my mom was able and willing to stay with us and help with household duties. This was a great relief to me. The spasms continued periodically throughout the day, although not at night while I slept. The spasms also occurred when I attempted any movement and when I laughed.  I didn’t do much of that.  I felt like a useless burden to my family.  My speech as well as movement was affected during spasms.  I couldn’t sign a check, write a sentence, drive a car, pick up my baby, or comfort my son’s fears when the ambulance took me to the emergency room. I couldn’t join the family at the dinner table for that first month because being upright made me nauseous, and I couldn’t stand long enough to cook a meal.  My mom would bring the baby to me to nurse and cuddle her while she napped, but since I was unable to sit up I couldn’t do much more than that.  I was afraid I’d miss her first steps because she was clearly about to take them.  Thankfully, I did not miss her big achievement!

All that time lying there that first month, I did a lot of thinking about what I was going to do. The doctor had no suggestions and I had no access to the internet, so I read what books I could get my hands on so I’d at least understand what was going on in my body to cause the problems I had.  I was sure that I had MS, but that diagnosis was not official until almost a year later because the doctor had to “observe” for that long to be certain.   I didn’t care about waiting for it to be official; I decided I needed to do something about it myself. I began with forcing myself to walk.  I walked through the spasms sometimes using the stroller as a walker. I forced myself to do fine motor activities because it was so hard and I did things around the house even though it stimulated spasms. I even talked through the spasms when not in public, trying very hard to speak as clearly as possible.  I did more and more as I realized that the activities I did got better while the things I didn’t do did not. I figured that I was keeping the electrical connections there even if they were faulty. After 6 months, the spasms were no longer visible, though I could still feel something internally, always making me fear that full-blown spasms would return.  After a year, the spasms were gone, leaving only a strange background sensation in my muscles that I call “static” for lack of better word. The Robaxin minimized that sensation then, and still does.

The thought that it would have been so easy to give up back then shocks me to this day. It terrifies me to think how close I came to sitting down and never getting up again. That memory is the constant, ever-available good side that reminds me that I can do this.  It motivates me like nothing else can to know that if I could do it then, I can keep doing it now.  And if I have come this far since then, maybe I can go a lot farther.

Jan.

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10 comments

  1. A difficult post, I imagine. Kudos for bravery, then and now.


  2. My hero. Thank you for all the life lessons–I am still learning from you. Thank you also for writing to Lorraine, about whom I care so much.


  3. I told you I walked later than Simon for a reason 😉


  4. What an amazing story. Thank you for telling it.


  5. Jan,
    Thanks for your honest and beautifully written post. I turned 34 this year, had my fourth baby in May, and was diagnosed with MS, or at least CIS, in July. Like you, I research quite a bit and am intrigued by the interrelationship between women, hormones and this disease. With the disease waxing and waning before and after pregnancy, there seems to be some connection between estrogen levels and the course of the disease.

    As such, I am wondering what you meant by, “It’s my understanding now that what I am experiencing is a common transition that happens in women with RRMS when their hormones start to wane. Apparently, the loss of hormones somehow affects the MS process in the body. If I had known that, if I had read that, if one of my doctors had told me that years ago, I would have structured my life differently and some things would have been easier today.”

    Do you have any advice or suggestions particularly about how you would have structured your life differently? I am very interested in any articles/research/books, etc, that have informed your viewpoint.


    • Kelley,
      Thank you for writing! You bring up some interesting questions/issues.
      I had my first recognized episode when my second child was 8 months old and was not officially diagnosed until my she was 18 months old. In retrospect, I really think that I was having symptoms 4 years earlier when my first child was 15 months old, but when I saw doctors at that time, no one thought that is was MS, it was just viewed as a little tingling in my shoulder blades probably from carrying around a child. The common pattern seen among women in their childbearing years is to see remission during pregnancy and for at least the first several months of breastfeeding, varying a bit among individuals. This is what my doctor told me years later. I think that because I was pregnant or breastfeeding continuously from the time I became pregnant the first time until my second child weaned, that the MS was held at bay until that second child’s nursing pattern dropped below some point that allowed the MS to emerge. When all hormones returned to normal after childbearing, I saw my symptoms ebb and flow with each monthly cycle, too.

      Many years later, I began seeing a new (to me) gynecologist because I wanted to investigate bio-identical hormones for menopause treatment. I had read a lot about bio-identical hormones and the logic of using those instead of the horse urine based hormones was obvious to me. Then when I also read about the link between estrogens and MS, I as on a mission to find a doctor who was using them properly and understood the link with MS, too. There is only one where I live so I was thrilled to found out she was accepting new patients and I made a bee line for her office. When I told her that I had MS, she said that she recommended a bio-identical hormone regimen that would keep me on an even keel, not re-creating a cycling hormone profile but one that kept me at the same levels all the time. This has worked great for me, no ebbing and flowing with hormone changes! She then recommended that I change to a different neurologist who also understands the hormone link and that was the best advise I ever got. That new neurologist is also a famed research doctor with her own research facility here in town. It is through her that I have the opportunity to participate in drug trials when they are appropriate to my condition.

      Back to the point…it is through the two of them that i have come to understand that whenever hormones change, any of the hormones, reproductive, adrenal, thyroid, etc, everything else in your body changes to try to accomodate that change. It often instead throws everything into imbalance and causes other things to happen, like MS flare-ups and menopausal symptoms. Both of those doctors as well as my internist told me, after the fact, that it is very common to see patients with RRMS to switch into SPMS when they begin the menopausal changes, most usually between the ages of 47 and 50. Now they tell me.

      So had I known that earlier, what would I have done differently? I would have sought out bio-identical hormone treatment much earlier, for sure by 48 when I first realized that hormones were beginning to change, but maybe at 45 to catch it before changes started and symptoms were developing. I don’t know if that would have prevented the change to SPMS, but I can’t help but think that it would have helped minimize it. I would also have structured my life differently. After divorce when I needed to think about supporting myself and my kids, instead of building a larger photography business all done vigorously outside with bags of heavy equipment, I would have taken a career path that would have led to something I could continue in a more debilitated state; like a nice indoor job at a desk. Maybe I would have built a house without so many stairs, although honestly, at this point, those stairs are good exercise for me…I just worry that someday I won’t be able to do them at all and I’ll be stuck downstairs in the garage! I think I’ll try to move before that happens, but I really would rather not have to move.

      A lot of my information comes from my medical team, put together over 25 years and composed of doctors who are really willing to talk with me about whatever I want to discuss and tell me whatever they can about what I ask. I get a lot of info off the internet, too, although one has to be careful, especially when reading about bio-identical hormones, that they authors and sources are good, solid medical sources. Hormones are NOT something to play with over the counter, that can mess things up real bad and they should be monitored and prescribed carefully by a physician who is well trained in understanding female hormones. Bio-identical hormones are compounded in a compounding pharmacy by prescription only. (Unfortunately, there are very few such hormone specialists in the country, some for women, very very few for men, who need it as bad as we do.)

      Try Googling “estrogens and MS” and “bio-identical hormones” to see a bunch of info to start with. Granted, you are only 34 and won’t need hormone replacement for another 10 years at least, but since you have MS it might be a good idea to get established with this kind of gynecologist before you need her/him for that. To find a doctor who prescribes them, find a compounding pharmacy in your area and call the head pharmacist there and ask the names of doctors who are prescribing bio-identical female hormones in your area. Then investigate those doctors and find one who is trained properly in that field and not just jumping on the hormone bandwagon to make money off us aging baby boomers. You’d be amazed how much of that goes on! Then call and see if you can make an appointment to meet and consult with any of the doctors who you think might be appropriate and talk to them, see how it feels, see how they treat the issues and see what they know. A lot of doctors have times set aside for such consults and sometimes they do that for free or greatly reduced fees. You will likely find a lot of duds before you find a good one.

      I hope i’ve answered your questions. I am so glad you wrote and I wish you the best of luck. Keep in touch and please keep following my blog and writing to me now and then.

      Jan.


      • Kelley,
        I sent a reply to Monique below that maybe you’d like to read, too, as it also addresses some hormone issues. It’s nevr too early to learn about that stuff, even if you are only 34. I wonder if there will come a time when hormones are used as part of MS treatment regimens and if that happens, you ought to be prepared! Either way, your menopausal day will come and then you’ll need to know.

        Hope we’ll talk again soon,
        Jan.


  6. I enjoyed and thank you for your most recent thought provoking post. I have not experienced any symptoms since my initial MS episode in 2005 (double vision) although MRIs confirm that I have brain lesions. Nonetheless, against doctor advice, I have steadfastly refused to begin a drug regimen. As you so aptly put it, I too feel “the specter of threatened relapse,” yet I remain symptomless. I live an active, healthy lifestyle which I believe may have contributed to my good fortune so far. I admit I am likely in denial, but it’s working! The side effects of some MS medications are intimidating to say the least. Now that I am enduring waning hormones and the dreaded “vapors” (at 47 I thought I had a couple of years to go!) I am worried that I will soon begin some sort of MS progression. Your courageous words and strong resolve inspire me to remain positive.


    • Thank you for your kind words, Monique, and thank you for joining in the conversation here on my blog.

      I am so glad that you have been in remission for these 4 years and hope that you stay that way for a long time. It has always been my thought, too, that keeping all systems in your body as healthy as possible helps fight off relapse and minimizes them to the degree possible when they do happen. It only makes sense that your immune system would function more properly if all the other systems are doing well, too.

      You mention that you are 47 and beginning to experience some hormone changes. I suggest you read my reply to Kelley’s comment above as it addresses the hormone issues pretty completely. I also urge you to read as much as you can find about bio-identical hormone replacement vs patented manufactured hormone replacements…the internet has a lot of information, both good and bogus, but don’t worry, you will quickly notice the difference. (if they are trying to sell it to you online, bogus, if it is info you can take to discuss with your doctor, then it’s a good place to start)

      I urge you to take the hormone changes that are beginning to feel now very seriously and I urge you not to wait to pursue preventative treatment with bio-identical hormones. I am not at all certain that you can hope to prevent future MS exacerbations by hormone treatment, but it would seem likely to increases your chances, especially if you are able to start hormone treatment before the hormones get low enough to begin causing reactions in your immune and organ systems. Hormone treatment’s most important benefit from my point of view is preserving your organs from the natural decline that happens when hormones decline, thus preventing disease and dovetailing nicely with other health preserving practices you already do. I know that when I started hormone replacement, I didn’t know any better than to wait until I was having full-blown hot flashes before seeking treatment…that was too late, the effects of low hormones had already started by that point and I wish I had started earlier. That’s not to say that starting when I did wasn’t certainly beneficial, it eased many uncomfortable symptoms and it evened out my MS symptoms so that they didn’t swing cyclically like they alway had when I still had periods. Still, I began at 50 and i really wish I had started a good 3 or 4 years earlier.

      It is my understanding from what my doctor explained to me that the same good effects are not achieved by using the more common manufactured hormone preparations (some of the common ones are Premarin, Prempro, Premphase, Depo-Provera) because your body does not recognize or use them in the same way that it would use and recognize you own hormones or a bio-identical hormone. This is because the bio-identicals fit the receptor sites like perfect puzzle pieces whereas the hormones derived from animal hormone, manufactured and patented, do not. Bio-identical hormones are pharmceutical grade, by prescription only and are compounded to your doctor’s specifications by a pharamcist.

      I hope you do remain positive because truly that is the best medicine of all! I hope you will continue to visit my blog site and read the new essays as I post a new one every few days. Please also continue to join our comment conversations, too, I would love to hear how things go for you.

      I wish you the best of luck and thank you again,
      Jan.



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