Dec 222006
 

Of all the problems with Multiple Sclerosis it was a dark day when I lost Dr. Pepper!

At the beginning of this exacerbation, about 6 weeks ago now, I noticed that Dr. Pepper was making my hands stiff, and Cherry Coke, etc. At first I suspected I was having an allergic reaction which was causing my problems, and possibly worsening the MS. After having identical problems with a single piece of chocolate, and other items, it became clear it was caffeine causing the problem.

Talking to the neurologist he hadn’t heard specifically of caffeine causing problems, but he listed off another drug that he used to prescribe for acute motor issues that would greatly exacerbate any sensory issues (and no I have no idea what the drug was). He thought that the CNS stimulant aspect of caffeine was causing a similar problem, but not doing any damage. Good that there is no damage, but bad that it causes problems. At this point, as I heal, the caffeine/Dr. Pepper has a lesser impact (on the rare times I consume it), but the negative is that somewhere along the line it is causing a bit of dizziness, and a sense of mental disconnect (worse when I am tired, which is easy without caffeine). I am happy that I am no longer a slave to the DP, but I am sure that I will get sucked back into the caffeine slavery at some future point when I am fully out of the exacerbation, and not having the side-effects (and I’m sure eriksgirl will want to kill me for that ;-).

  7 Responses to “Et Tu Dr. Pepper!”

  1. I guess so much for switching to Mt. Dew. Not that I like it anyway – yuk!

  2. Hey Erik,

    I want to wish you a happy holiday. Your blog means a lot to folks out there, and reaches a whole new group every day through SharingOurDays.com. I honestly believe that the time we take to communicate our lives is having a big effect on people around the world. You are making a difference.

    All the best (however we need to define that) today and every day.

    – sean

    Sean Spence
    MS Advocate & Founder, SharingOurDays
    http://www.SharingOurDays.com
    http://www.MissouriToManhattan.com
    seanspence@earthlink.net

  3. Welcome back! I found your blog just before you went on hiatus, and have been watching for updates since.

    I’ve had MS since (at least) 1986, but wasn’t diagnosed until 2002. I’ve been on Rebif since 2003, disgustingly problem-free (so except for encouraging those who haven’t started yet that misery isn’t guaranteed, I don’t have much to say on the matter).

    I had an exacerbation in March and my doctor was going to prescribe Solumedrol, but by the time I’d gotten the logistics worked out –I’ve never taken it before and I only had the energy to make a couple of phone calls/day–I was improving daily without it. The anecdotes I’ve heard about intravenous steroids make me wonder how useful they really are: most report that their symptoms began improving after a few days on the steroids and were mostly resolved after 6 weeks. My experience of exacerbations (I’ve only had 1 obvious one since diagnosis, but had several in the years between 1986 and 2002) is that the “acute” exacerbation lasts about 48 hours, then my symptoms begin to abate, and they’re largely cleared-up in 4-6 weeks.

    As my neurologist said, “…and if you’d taken the Solumedrol, we’d have been saying, ‘Didn’t the steroids work wonderfully?'” So unless that pattern changes (or I present with a really disabling symptom like paralysis or blindness), we don’t see any reason to risk the steroids of side-effects for a benefit that seems dubious in my case.

    However, I did take advantage of my company’s short-term disability policy for the first time, and after 4 weeks of rest felt better than I had for several years. Of course, then summer intervened…

    I, personally, wouldn’t consider increased numbness/tingling localized to the palms of my hands to be a “real” exacerbation. That, for me, is usually a “pseudo-exacerbation” and means I need to take some time off and rest more. Fortunately, I have 6 weeks of vacation time, so I find taking a week off every 2 months has made a big difference in avoiding illness, but it doesn’t leave me any time (or enough extra energy) to plan a genuine vacation. I’m thinking about seeing if I can take a few weeks short-term disability per year (under FMLA) for disease-management. Logically, it’s better for my boss if I take time and prevent illness, rather than waiting until I get sick at a time when my services might be particularly necessary.

    –Gwen

  4. Sean,
    Thanks, and a late Merry Christmas to you!

  5. Gwen,
    I’m glad you are doing so well!

    I would certainly agree that tingling is not a major exacerbation (heck I have that pretty much all the time in my hands as permanent damage, in the minimum when I am hot). This exacerbation was a loss of sensation in the hands, and with my history I wanted hand problems treated aggressively. I have small problems more frequently that get no additional treatment.

    I hope all continues to go very well for you!!!

  6. Yeah, I’m just thinking that your exacerbation may be better labeled “Holiday Stress.” I understand that poor hand-coordination causes a computer programmer (I’m one too; inability to type with my left hand was one of the reasons for taking disability last Spring, especially since unlike most programmers, I actually touch-type.)

    I’m having to push hard to get a bunch of year-end stuff (that I should have prepared a couple months ago) done, staying up into the wee hours and working more intensively than usual, and by the time I get to bed I’m very “buzzy” all over. NSAIDs seem to relieve that sensation somewhat, so I can sleep (along with a couple of Xanax).

    My neurologist & I have a bit of debate over whether some residual numbness/tightness in my left hand is MS-related or carpal-tunnel syndrome. It’s an old symptom to me; it started as residue from a 1987 exacerbation (not that I knew what it was back then) where among other things I lost all proprioception in my hand for a few weeks. When I recovered, the “rubber-glove” sensation remained.

    It went away the day I handed in my Master’s Thesis (grad-school + full-time employment seems to have been the tipping-point for MS), and stayed away for a few months, then was back for 11 years until I started telecommuting. (Mmmm. Telecommuting.)

    It returned with this last exacerbation. I figured out the sensation was actually mild spasticity when I realized I was keeping my hand in my pocket because (at rest) it was curling into a loose fist. My neuro was skeptical of this description, until he whacked my wrist with his hammer and the reaction told him I was right. (Lesson learned from years of being a female programmer: don’t get all upset when some expert doesn’t take you seriously, just cheerfully prove your point. They usually listen better afterwards.)

    But now the reaction he gets from tapping my wrist suggests the remaining tightness is carpal tunnel. (But, I point out, onset is always associated with MS incidents…) He offered to refer me to a neurosurgeon, but I’m not going to have surgery to attempt to relieve a sensation that I only notice when I think about it. Especially since I don’t think it would work…

    –Gwen

  7. Hello,

    I have experienced this but when I get it my whole right side becomes numb and my vision gets blurry.

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