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Fightin’ Mad

September 13, 2009

Sometimes I think about what I’ve already done, the parts of my life that are finished and behind me. I completed my education when I was 22yrs old like most people I guess.  I’ve had my children, which was probably the biggest thing I ever did.  I’ve been married and divorced. I recreated a life for myself as a single woman in my 40s. I built a photography business first in portraiture, then changed course and took on architectural photography, all the while doing fine art photography, too. I raised my kids, got  involved in their schools and our community. Then I helped them get into college and sent them off.  And now all of that is over and done.  So what do I do now?  I’m a full-time patient in transition between that last life and the next one that surely will become real sometime in the near future.  Maybe I’ll become a grandmother, or a new wife, or I don’t know what!  Sort of feels like it did at 18, when I went off to college and had no idea where my life was going to go, but I set off anyway sure that it will go somewhere. This time though, I have some limitations that I didn’t have last time I built a life.  It makes me mad.  Fightin’ mad.

I’m not mad at anyone in particular. I hope you read that title to mean I’m determined to fight and ready to go!  That’s what I am, not really mad.   Now that my MS has changed to Secondary Progressive I have to fight a lot harder to stay on top of it.   Interestingly, I am finding that the more I fight it, the more those efforts help and the more fighting I want to do.  I’m fighting it with a new energy I wouldn’t have thought possible a year ago.  As you know from my previous post, I have fought my body’s problems for the last 20 years, but now I have new weapons in my arsenal.

When my kids were little, my motivation to work hard against MS was to stay functional enough to raise them and to do that without them having to miss anything because their mom had MS.  Now the motivation is different, but not so different really. Now it’s me whom I don’t want to miss anything because of MS.  I want to have some part of the life I expected to have by my mid-50s, although that is probably somewhat unrealistic.  So, I will be happy with being able to continue to move around as I need and want to, to stay functional enough to hold and play with my grandchildren someday, and functional enough to work as best I can and enjoy the life I have.  There are certain things I can’t do anymore, dance a Chopin Etude en pointe, hike a national park, walk a foreign city’s length and breadth, or do an all-day shoot photographing out in the sun…but there are still things I can do, and that motivates me to keep working at it.  Those are the goals.

As part of the research that led to me writing this blog, I became interested in a lot of other blogs and websites relating to MS and the drugs and treatments that are used to treat it.  I’m learning a lot and talking to a lot of interesting people and that adds to my resolve and my ability to find ways to fight.  Some ideas and methods I use to fight it are tried and true ways I’ve done all along. I try to share those things with everyone else just in case they might find something I do to be helpful for them. I like reading other people’s experiences, too, for the same reason, it gives me more ammunition for the fight!

I’m not a person who has been anxious to try drugs in my 20 years with this disease. When I was first diagnosed, the only drugs offered to MS patients, at least that I was aware of, were either anti-seizure drugs or antidepressants.  When I was given Robaxin, it was given by the ER doctor because I was having muscle spasms, not because he thought I had MS. Actually, I don’t know if he suspected that or not, but when I got to the neurologist a few days later and told him that the Robaxin was helping, he said, “well, whatever works” and continued to prescribe it for me.  Steroids were sometimes used then, as they still are now, for acute emergency situations but my situation was not deemed an emergency requiring steroids. 

In the next several years after my diagnosis, drugs came on the market that promised to prevent progression of the disease; the interferon based drugs and the drugs that suppress the immune system to prevent its attack on the myelin sheath.  I never wanted to use these drugs and so I never did.  Maybe part of it was that once I achieved remission my symptoms were not so bad as to drive me to seek drug treatment, but the bigger part of that decision was that how those drugs were said to work scared me and I was afraid of what they might do to the healthy parts of my body.    

I continued without drugs through my entire Relapsing and Remitting course and a couple of years into SPMS, too, until summer, 2008, when my new neurologist suggested that I take part in a drug trial being conducted with the first drug ever developed specifically for Secondary Progressive patients.  It was a phase 3 trial, so the drug had been shown to be safe and I liked what I read about how it acted on the body and what it was supposed to do.  The best part was that there were no side effects observed other than soreness at the site of infusion…I didn’t even have that.  Early on in the protocol, I began to wonder how the company was going to adequately evaluate efficacy though, because it didn’t seem to be measuring many of the significant things that indicate improved function or lack of decline while focusing instead on rather insignificant observations and numerical data.  There were also several factors that affect function in MS patients that were not considered, like the heat we Southerners and South Westerners experience and how it temporarily exacerbates whatever symptoms to which we are prone.  I was afraid it was making it seem that we weren’t making progress when in fact we might have been, but had just come in from the heat when we were tested that time.  I joined the trial late in the enrollment period, in fact I was the last ID number assigned in the trial…such a distinction! 

So I was about to have my visit #5 when the announcement was made that the trial was being discontinued because the company was disappointed in the overall results shown in the patients who had completed the 2 year trial…they didn’t even let us all finish!   I was very disappointed.  I had such high hopes for that drug, such hopes that maybe my condition would not continue to deteriorate as it has in the past 2 or 3 years.  I called my research coordinator at the neurologist’s office and asked what was going to happen, and she told me things that were revealed to her and the doctor after the announcement was made and they were “unblinded”.  It turns out that patients in our trial group who received the drug were having good results.  She also told me that I had been on placebo although I felt like I got the drug because numbness in my feet had diminished during that time.  Not that it really mattered except to make me feel that I wasted 9 months on high hopes and going through that protocol.   Our neurologist is talking to the company about what can be done to maybe continue the trial or re-do it since she was seeing good result in her group, maybe out of her own research facility with their cooperation, of course.  I haven’t heard yet what new plans might be developing, if any, but I still have hope that the drug might yet become available again in trial and ultimately in approved use. 

In the meantime, I went into high gear yet again to see if there was anything else out there that might similarly help while not damaging the healthy parts of me.  I work really hard to keep my whole body healthy with diet, carefully selected supplements, and exercise and I am not willing to compromise my general health for a drug that might inhibit the MS but not for sure. Actually, I might not be willing to risk general health even for a sure thing because honestly, what good is tackling MS if the rest of your body falls apart in the process.  Again, maybe my case is just not bad enough to make me willing to try everything on the market, and for someone else the risk of organ damage might be worth it…I’m not at that point. 

It did not take long before I discovered several references online to a drug being used for MS and several other autoimmune diseases called Low-Dose Naltrexone. This is of particular interest to me because I have several other autoimmune diseases, too.  It would be great if LDN could help more than one of my health problems simultaneously. I discussed it with my neurologist and she had nothing but positive things to say about LDN and said that she has other patients doing well on it.  She wrote the prescription and I started taking it 2 weeks ago.  I think I am still adjusting to it a bit, but the adjustment symptoms have not been bad and I am feeling some improvement in muscle fatigue and maybe some reduction in heat sensitivity, too.  It has disturbed my sleep some, which adds a different fatigue problem, but the information I have found says that will pass as my body adjusts to the medication.   I am hopeful again with a new tool in my arsenal and we’ll see how it goes.  If you’re interested, there are some links to information about LDN on my Links page in the right margin.

All this talk about drugs when, in fact, I believe that by far the most important tool I have in this fight is my physical therapy regimen that has developed over the last year and discovered by accident. 

Entering secondary progressive MS after so many relatively benign years of remission, I feel like I’m re-living the phase after my first episode when I worked myself into that remission by forcing my body to do what it was failing to do normally.  I’m looking again for new ways to challenge my body to function better and re-build strength.  

I discovered physical therapy when an old injury was causing my left knee not to work well.  My orthopedic surgeon determined that building strength in the surrounding muscles and structures would help with function and as I built strength for that purpose, lo and behold, I found the workout helped counter the MS symptoms, too.  I began to add more exercises to build strength in other areas where I have weakness, and it worked.    I am working out with vigor I haven’t had for 30 years.  I’m working out hard for an hour or 2 each time and it not only is showing physical results but just plain makes me feel good…real good. I have noticed that with MS, my muscles can’t hold the strength I’ve built for very long before it starts to drain away again.  I find that I have to do my complete workout at least once but not more than twice per week or my strength and coordination decline again very quickly. I discovered early on that I can overdo the exercise and then the result is more weakness and muscle fatigue rather than less, so it is a fine line that a person with MS walks with physical therapy.  I especially appreciate that I have physical therapists to talk with about everything I’m doing or want to try, they make sure I’m doing it right, and give me a lot of encouragement to keep pushing to the degree that I can.  The MS prevents my building strength like I did when I was young, but it definitely has increased it enough to make a big difference.

My neurologist recently opened a new office, research facility and wellness and rehabilitation gym.  She recommended that I have an evaluation and consultation with one of the physical therapists in her gym who works especially with MS patients, so I did.  I am seeing the new PT once a week for a month while she is helps me learn new exercises for me to do to help areas that my strength building work neglects…mainly balance and core strength for full body and sort of diagonal movements.  It was very interesting in the evaluation to see clearly where my particular weaknesses lie and where I am able to maintain pretty good strength. She is very confident that I can do a lot more than I thought possible. Maybe I’m still a little skeptical about what I will be able to do, but I so appreciate her encouragement and confidence in me.  Once I learn the new routine well, I will be taking this new knowledge back to my regular PT gym and adding her suggestions to my regular routine.  I can do a lot of it at home, too, if I find that I need and can tolerate it more often than I go to the gym.

These therapists provide a huge new weapon in my fight that I didn’t have in the first round 20 years ago.  Physical therapy now is an interesting extension of what I did then, thinking that I was maintaining the electrical connections.  My new PT consult confirmed that in fact that is exactly what we are trying to do with the exercises; maintain connections, recreate connections damaged by MS, and build ways to compensate for lost functions. She says that I was right back then to do what I did instinctively.  WooHoo!  I always felt kind of dumb for coming up with that theory 20 years ago and have never told my doctors what I thought back then…now I won’t be shy about spreading that idea because it really does work and the PT and medical worlds recognize it now, too!  

Sometimes it’s very good to trust your instincts about your body and how you treat it…I think it’s good most of the time. 

I think it is my most valuable tool in the fight.

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2 comments

  1. Hiya~ We’ve chatted a bit on the LDN Facebook group. I think you and I are on about the same week of LDN but in totally different phases of MS. I think that in itself is very interesting and we should continue to ‘compare notes’. I’m early 4th week on 3.0 mg. I think I’m going to try to up to 4.5 this weekend to get as much protection with LDN as I can. My symptoms are very minimal in RRMS and recentaly diagnosed though I probably should have been diagnosed 2 years ago – I guess… I only did ‘conventional meds’ for 3 weeks. I couldn’t tolerate the needles every day!

    LDN is the choice for me.

    Can I ask what the trial was? I know they recently did a trial on Anti-D (WinRho) was the mfg name a long time ago. It did well in the RRMS phase but they canceled the trial in your phase. I wonder if that was it? My husband used that 10 years ago for ITP (Idiopathic Thyrombocytopenia Pupura) until he had his spleen removed.

    Anywho… Trust your instincts. That’s what I’m working on every day.

    Nice blog… Feel free to email!


    • Hi Janelle, nice to hear from you again…and thank you for your kind words about my new blog. 😀

      Please look at the LDN links I have on this site…from what I understand, increasing the dose does not necessarily increase effectiveness. In fact, it can apparently lessen the effectiveness because of how the drug works with the body. Naltrexone is sort of like aspirin in that at very low doses it’s effective for one kind of therapy (cardiopulmonary), but at higher doses it works for another purpose (pain relief). At low doses Naltrexone acts on immune function, at higher doses it is used to lessen cravings in heroin and alcohol addicts. It would be wise to consult with a neurologist who really understands the off-label use of Naltrexone in order to get your dosage set at a level that will be optimal for your condition.

      As for the trial in which I participated, because it is still a bit up in the air, I don’t want to name the company nor the drug itself here in my blog, but I will tell you that it was specifically designed for SPMS, and was not the drug nor the company that you mentioned. I am hoping the trial will be reprised and the drug found to be effective and ultimately made available to the public.

      Good luck to you Janelle, the combination of instincts and information is so important! Keep me posted how your LDN course goes, I hope it goes very well for you. So far so good for me!

      Jan.



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