Carolyne’s MS Odyssey

Well it looks like I have come full circle now!

I am, as of this week, officially off any MS drugs (No to Rebif, no to Avonex, no to Copaxone, and no to Betaseron). After all the trouble I have been having recently with drug reactions (see prior posts), I was taken off of Rebif temporarily in early June, with the plan being to see my MS Neurologist at the and of June for re-assessment and creation of a new plan.

Within about 8-10 days of being off the Rebif, my friends, family, and co-workers began to notice that I seemed much more alert and mentally sharp. As my sweetie Kim said (in his ever eloquent way “Honey, you are firing on all cylinders again!” My best buddy kasey said “You are you again! Perky!” My swelling (edema) went down significantly too, but did not fully disappear, as I was still having bouts with it. As of a couple of days ago, I am also done with Lyrica (my pain med), since my other neurologist at the NS rehab centre noted that side effects of that are weight gain and edema too. My edema is diminished almost completely now, and I feel so clear headed, despite the return of the pain. I am starting to feel like ME again…and that gives me hope that I can shed the medically-induced weight once again, as well as giving me re-newed hope for my ability to continue working a good long time as a contributing member of the work-force. (This is a big one for me, because my self-esteem is strongly tied to my ability to be fully independent – including financially.)

I prepared for my late-June my medical appointment with my primary neurologist like I was getting ready to go to battle. I was ready to go in there and fight to keep OFF the drugs. Well, lo and behold, before I could even take a deep breath to launch into my prepared speech, my doc said that I should just say no to any more drugs! Wow! We were on the same page. After reviewing all the various MRI’s, cognitives tests, lumbar puncture results, and now the latest reactions and troubles my body was having with the meds, Doc was of the opinion that the cure was worse than the disease.

Tumorific, or tumefactive, multiple sclerosis is rare enough that they really don’t have too much research on it. The little literature that is out there about it reports that tumefactive MS often shows negative or inconclusive results on lumbar punctures (mine were positive) and often presents with minimal developments or progression after one exacerbation.

In looking at my recent results and the course of my MS disease over the past few years, the thinking is that my MS should be relatively stable. I presented as relapsing-remitting earlier, but once I shed the 80 lbs that Copaxone helped pack onto my form, my symptoms remained fairly stable (though on-going) with fewer clear exacerbations to specify. The cognitive issues and vertigo, as well as the pain and fatigue, showed as steady decline. The recent turn-around cognitively and even fatigue-wise has us thinking that the drugs were causing more problems for me than the MS itself! The plan now is to keep me off the MS treatment drugs, and use Sativex for pain as required until I find my balance and clear my system of the muddying effects the drugs had on me. We will then do another cognitive testing battery, and my MS lesion will be monitored by yearly MRI’s to ensure it remains stable.

I am absolutely thrilled to be off the medications! Even though my pain and fatigue remain significant issues, I feel like I have my “marbles” back. I also feel that I can now successfully tackle the medically-induced weight gain and get the weight off me sooner rather than later. The weight is bad for me too – creating its own secondary issues such as more pain, joint problems, fatigue, acid reflux, and more. My body simply cannot tolerate too much weight on my frame. So, though I have some hard work ahead of me, I am determined, and more motivated than ever.

So here we go, down a new path, into relatively unexplored territory of tumefactive MS management. Wish me luck – and stay tuned!

It’s been a little over a month now since my re-diagnosis of MS. How am I feeling, you ask? I am feeling like I have just finished going through a bizarre “out-of-body” period, and now I can get back to the business of living my life – in whatever capacity that means.

I am still recovering from the after-effects of the various chemicals that were pumped into me at various times during the testing process, combined with the stresses, and the hives, and the pains. The hives never fully went away, and I am still struggling with severe water bloat that accompanies it. I seem to react allergically to anything that contacts my skin, except for natural oils such as olive oil, almond oil, etc. Swimming can be extra fatiguing, since I have developed allergic reactions to chlorine – so I take an anti-histamine med before each swim practice (2x per week). If I forget, I turn red and sneeze all day – and become so fatigued I cannot remember my own name. But the swim practices themselves do me so much good that the positives far outweigh the negatives. (The Masters’ team coach is absolutely amazing and good for driving motivation.)

I did the MS Supercities Walk on May 4th here in Halifax with a good friend. I did the whole route, and we brought our dogs along with us. My pup is getting long in the tooth now – and I am not sure who was more exhausted by the end of the day, me or him!

With my February increased dosage of Lyrica for pain, and/or the accompanying hives and water retention problem, I have been very frustrated with the scale and the fit of my clothes. The scale has gone up rather than down – though from body measurements through my trainer, my body fat content has gone down slightly, my clothes are tighter and I look and feel so puffy. She can feel the water under my skin – and I think the situation is driving us both nuts. With the amount of exercise and weight-training I do, my weight should at the very least be maintaining itself, or dropping significantly, rather than creeping constantly upward. Lyrica is known to have an aggravating side-effect of weight gain; I think I am seeing it. I am considering going off Lyrica and focusing on exercise as my sole pain management, because I am reaching a point of diminishing returns. I will not allow the situation to continue to the point of having to buy larger and larger wardrobes, and/or trying to increase exercise to the point of overtraining and increasing fatigue, as that creates more pain and fatigue, not less. My body frame can only tolerate so much weight – and after that more health problems are created. I will not go down that slippery slope again. Been there, done that.

So – how am I feeling these days? Glad to have my life back as I know it, and frustrated at the same time to be dealing with the medications necessary to help me manage that life. Finding the balance is the key – and that is a constant struggle, ain’t it? Juggle – juggle – juggle!

Hey – I hear the circus is coming to town. Maybe I should audition, eh?