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CCSVI & me (10/10/10 update)

Oct 10, 2010 - 2 comments

Although this is not the future I had hoped for, recently everything seems to be worse. My post-CCSVI gains have mostly reversed. In many areas, I am worse than I was before, although whether I am worse than I would've been without the CCSVI (or its placebo effect) is impossible to say. Many people who have their veins close up again seem to experience a rather sudden reversal whereas I have had a gradual decline. I don't know what that means either, but maybe it has something to do with the fact that my problem seems to have been a malfunctioning valve rather than significant narrowing of the jugular veins.

I have gone on another downhill slide of getting worse more quickly since mid-June. This often happens to me in the spring or early summer and lasts for months. I tend to feel more stable or slightly improved in the winter and early spring. Unfortunately, I have never been able to identify clear remissions so I always worry when things get worse as most of it never comes back. I do sometimes seem somewhat better, but usually that can be potentially attributed to some external factor like starting baclofen or doing PT for my balance.

I am having more trouble walking. I can't walk as far and I'm relying more on the cane. I feel bad as soon as I start walking rather than after a while, although I'm starting to get used to this feeling. (When we were moving and I saw how much everyone else was able to do compared to me and when watching my sister swing her two-and-a-half-year old around, I was struck, or perhaps appalled is a better word, by how much I have habituated to my new reality, but there doesn't seem to be any other way to keep going.)

I am not sure now that I could walk the half-mile to work that I used to do before we moved, although in the end I was relying on the cane the whole way, which I'd never had to do before. My 25-ft. timed walking test has always stayed stable in the six-second range despite real deterioration in my actual walking ability and the fact that I am routinely passed by everyone, even little old ladies. These tests sometimes seem so unlike real life. In real life, on the way to and from work, I used to have to cross a street that had one of those countdown timers on the "don't walk" sign. I never dared to go once the countdown started because I can't walk very fast, I certainly can't run if I had to, and even to speed up to finish crossing the street would involve a potentially larger extra expenditure of energy than I could afford. After all, unlike the 25-ft timed walking test, I had to walk all the distance before and after the crosswalk as well.

I sometimes wonder how neuros can see the big picture in the artificial environment of the exam room where the patient is only asked to do brief little exercises that often don't resemble anything in real life and where resting is allowed before and after. I wonder if they even have any way to measure things that only get worse over time, like muscle/nerve fatigue. There might not be a safe way to do that.

I see the day when I won't be able to walk looming closer than I had hoped.

I am getting more stiffness, especially in my legs and feet, but also in my fingers and upper arms, especially when I bend them. I'm not sure how much of what I feel in my legs and arms is spasticity and how much is paresthesia, but some of it does seem to affect functional things. I am walking more straight-legged and am having a harder time thinking my legs into moving; they seem to seize up after a while. Surprisingly, I can still stretch about the same. Ironically, I am actually doing much better when I do the stretch where I sit down with my legs out in front of me and touch my toes. I used to just barely be able to reach my toes, but now I can go past them. I'm not sure I'm doing the right stretches, though, since I think the PT just gave me general stretches and not any specifically for where I've got spasticity. I have to admit that I have trouble getting motivated to stretch as much as I should when the stretching doesn't seem to do much of anything. I've upped the baclofen, which also seems to have no effect whatsoever. I am not sure how much further up it would be a good idea to go nor whether it makes much sense when the upping I've done doesn't seem to do anything.

Not only are my upper arms tighter, but they also sometimes get sore after lifting things like pots that shouldn't be so heavy. This is happening more frequently recently. Even though it never seems to show up on any neuro tests, my arms have definitely gotten weaker over time. My hands also seem clumsier recently, which is messing up my typing even more. The problems with my hands and arms scare me more than the prospect of not being able to walk. I can, although I don't like it, envision a fulfilling life in a wheelchair, but if my arms stopped working, I'm not sure I could handle that level of lack of independence. A couple times recently I have apparently put pressure on my hand at night and woken up and not been able to feel that hand at all. I don't even feel like I have a hand. Fortunately, I can still move it (which is a really weird thing to do) and after wriggling it for a while, the feeling comes back, but it was an unsettling experience.

We recently moved across the country and I had an insight into why the spasms might have been the only thing to get worse post-CCSVI. Surprisingly, I didn't get spasms in my legs during the long car trip even though sitting still for a long time, especially as it gets later in the day, is usually a trigger for them.

Immediately after the CCSVI procedure, the spasticity got significantly better. Enough better that a couple weeks later a neuro marked me down as having no spasticity (although to be fair I was still taking as much baclofen as I had been taking before the procedure). However, the spasms got significantly worse post-CCSVI. Before our trip, the spasticity had been getting worse again. It occurred to me that maybe my spasms and spasticity are working in opposite directions so when the spasticity is worse it covers up the spasms, but when the spasticity is better, the spasms aren't being suppressed anymore. The spasticity makes my legs want to be straight and not bend. I tend to walk without bending my knees very much. On the other hand, the spasms make my knee jerk up and bend more. There seems to be an inverse relationship and as the stiffness has gotten worse, the spasms went away for a while.

I am getting some spasms now. For example, my right leg was spasming mildly for a while last night before I went to sleep. Also, my right foot was cramped up when I woke up today, which is a new thing. However, the spasms continue to be much less frequent than they were before the spasticity got so bad. In many ways, the spasms are worse than stiffness because they are abrupt and unpredictable, therefore more disruptive (although I would take back the level of spasms I had post-procedure to have the reduction in spasticity I had then). I can often relax into the paresthesias and stiffness, but I've found it impossible to adapt to the irregularity of the spasms.

The paresthesias are also worse. They have become more intense with a lot more burning. When I last took the NARCOMS survey, the question about whether pain or discomfort prevented me from doing anything recently for some reason triggered me rethink my take on this. I have tended to categorize my paresthesias as unpleasant but not painful and felt like I was dealing with them fairly well. However, I realized that I really do unconsciously avoid quite a few things because the paresthesias make them uncomfortable. For instance, at our old house, we had a nice yard and vegetable garden. Even though I can't do anything productive outside anymore, I did sometimes like to go out and walk around. I tended not to want to do this for very long because standing would very quickly become unpleasant. I would sit down long before my legs were even close to giving out.

I am not taking anything for the paresthesias and have resisted the idea because I am more afraid of any side effects, particularly foggy-headedness and fatigue, but also weight gain, than I am of the paresthesias. Recently, with the worsening of the paresthesias, I have been reconsidering this. I did see a neuro shortly before I left and intended to ask him for a prescription for something in case it got too bad, but we ended talking about other things and time ran out.

I have less sensation, especially in the bottoms of my feet, which seems, in combination with the increased stiffness in my legs and my proprioception problems, to be contributing to a worsening of my balance. I am relying a lot on the cane outside the house mostly because it makes me feel more secure on uneven ground. I am having an unreasonable amount of trouble going up and down even normal-size curbs due to the balance and stiffness problems.

I have also noticed that my short-term memory is terrible recently. Even when I make an effort to try to remember something and conjure up some sort of image to hang it on, I keep losing things. Of course, this happens to everyone, but I have had a noticeable increase in the frequency of these kinds of instances.

I do feel a little more tired but not in dense fog like before the CCSVI procedure. However, I have had a few short episodes of being in some bottomless, sleepy fog that brought back bad memories of how it was before.

It's got cooler here and my extremities are colder, but my internal temperature still seems to be in the normal range

I sometimes wonder if the synergy of my various symptoms is making this worse than the sum of the individual symptoms would linearly add up to. In the neuro exam room, it never seems like there's anything much wrong with me and yet in real life, my world just keeps narrowing and getting more difficult. I hate to be such a complainer, but I am so tired of feeling lousy all the time. Nothing dramatic ever seems to happen with my MS, but I feel like Aesop's tortoise marching forward slowly and steadily and am afraid I am going to win a race that I don't want to win.

I realize I'm mostly just blocking this deterioration out by ignoring it and trying to push forward. I'm not sure there's any other way to get through what I have to get done, but this may turn out to be a foolhardy choice. In the past couple months I've wrapped things up at my old job and with our old house, said good-bye to many friends, moved across the country and started a new job. I love the new place and the new job, but part of me is just desperately hoping this wasn't a completely stupid move. I am not eligible for long-term disability for a pre-existing condition until I've been on this job for a year and I'm trying not to contemplate a future where I can't hang on that long. I hadn't thought it would get this bad so quickly and there's no telling where the wheel will stop spinning. There's been research that has shown that later in life people regret more the things that they don't try than the things that they tried and failed. That seems right to me and I am trying, but perhaps they should have combined that research with something on looking into how to identify sensible odds for trying new things.

I don't have a new neuro yet, but am working on it. I'm waiting for my old doctor's office to send the records so I can hopefully get scheduled. On the other hand, I'm not optimistic that they'll be able to do anything much for me. I think MS has made me much more fatalistic than I used to be. So far as I can tell, the MS is going to do what it's going to do and I just have to figure out a way to deal with it. Or not. I've been through this cycle of worsening, freaking out, and adapting to some new normal so many times that you'd think I'd be used to it. But somehow I'm not.

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572651 tn?1530999357
by Lulu54, Oct 10, 2010
This is not the news I had hoped to hear from your new home, but I am glad you felt comfortable to share all of this.  What a tremendous disappointment for you, but I have to wonder how much of this is connected with the emotional and physical stress you have endured with  the job hunting, packing up your old home, relocating across country and resettling into a new home and job.  That is a lot for any healthy (whatever that is!) person to  undergo in less than a year.  It wouldn't surprise me if all of the above could put you into a relapse.

Please stop and be kind to yourself while your body adjusts. And find a doctor out there who can evaluate what is going on. I will hope for you that these changes are merely a manifestation of stress and are not permanent.  

hugs and more hugs,

333672 tn?1273792789
by shoshin, Oct 11, 2010
Thanks for the good thoughts. The move and all has been stressful and I, too, hope that as that passes, I'll be better. They say that positive things like moving and a new job can be big stressors, just like all the big, bad things. The more realistic part of me sees that this started in June before the whole move process and is following the same pattern I've been in for the last several years. Only time will tell.

I am working on getting in with a neuro here. Hopefully, soon.


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