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  • JDB
    September 7, 2016 at 6:30 am

    Now another year has passed, and I’ve been fully emerged in an active lifestyle. Sometimes I feel like I’m not doing as well as I used to, or can’t run as fast – that darn old GBS sure has lasting impact. BUT THEN… I realize that in my early fifties, I just might be feeling my age. No need for “GBS excuses” if, these days, I can’t run as fast or as long or as hard as I did in my thirties. So my GBS days are also a marker in time as well as a medical incident.
    My most evident lingering effect of GBS is remnant muscle weakness (slight paralysis?) in my lips. I can’t quite smile anymore, I can’t curve my lips upwards. I need to be careful speaking lest I slur my words (letters P, B) without realizing it. No problems eating or drinking. I think new people I meet don’t really notice; heck, maybe I was always that way. I wonder if there is extra treatment for this? Maybe a bit of surgery?

    July 13, 2015 at 6:03 am

    Here’s a follow up, one year later after my initial diagnosis of GBS. I feel quite fortunate about my recovery. I was diagnosed with GBS at the end of May 2014 and spent the summer first in a hospital and then in a rehab clinic for physiotherapy. At my lowest point: I couldn’t stand up or walk, I lost all my facial muscles, eyes would only close halfway, arms were weak but still working, lower digestive track shut down (had to plead for enemas), wild blood pressure fluctuations (mostly upwards), and I was generally uncomfortable with various pains including pins and needles in legs and feet. But – I was never on a ventilator, although my chest muscles were weakened.
    I received IVIG right away. My arms and hands recovered rather quickly, and after much therapy and exercise, I’ve had a productive year 2015 with safe driving, cross-country skiing, bicycling, running — I ran a full marathon in April, with an uphill mountain marathon coming up at the end of July. My face has taken the longest to recover, and though my lips don’t fully smile yet, I’m optimistic. When I meet new people, it’s no longer obvious that I am/was ill, so I don’t have to explain myself any more. In addition to standard physiotherapy as an outpatient, I also did acupuncture and took daily Centrum vitamins and also a vitamin B supplement. I feel that all of these helped.
    Now my therapists and acupuncture doctor say I’m done with their treatment and am more or less cured, although I still do some facial massages myself. I have minor residual pins-and-needles in my toes but rarely notice it – I started wearing “rubber footsie shoes” to expose my feet to the environment more and this seems to help.
    My brother-in-law was very impressed and used my story in a corporate speech:

    October 8, 2014 at 3:56 pm

    I’ve heard that stress weakens your immune system, so it could be a contributing factor. So much is unknown about GBS et all that I wouldn’t rule it out.

    October 8, 2014 at 3:42 pm

    I hope these anecdotal descriptions are being summarized somewhere in a medical symposium, so the rest of us with similar conditions have an approximate idea what to expect with our own prognosises. Any updates from gyro1 or crlyn324 ? The Internet is full of one-time “help” requests for which you don’t get any follow up. In my experience, once a person has a success story, the urge to update earlier posts just vanishes and the rest of us Googlers are left hanging.

    October 8, 2014 at 3:35 pm

    I live in Europe, and after I applied for a handicapped parking sticker, the driving office summoned me for a medical examination a few months later to determine if I am still qualified to drive. It’s a hassle for me – I guess you Americans will complain again about intrusive governments – but here they’re thinking more about other drivers on the road who are at risk from less than fully competent drivers who insist on driving for their own convenience more than the safety of others. But the main target is not GBS patients, who are also relatively rare, but rather, the usual victims of strokes or old-age and are in denial about the whole thing.

    September 23, 2014 at 7:28 am

    Sure, is there and easy way to catch those past posts with a simple search?
    There seem to be a lot of “junk posts” about kitchens cluttering up the forum.


    September 22, 2014 at 5:27 am

    Thanks MH for sharing your awareness and opinions. The time frame you suggest is in league with what I’ve read about this illness, but all of the literature and all medical staff I’ve spoken with say that a person’s affliction and prognosis are quite variable. Also there are many unknowns regarding treatment beyond the initial IVIg and plasma filtering; medical technology has not progressed as quickly as with other diseases. Even IVIg, the “gold standard”, is not officially approved yet for GBS but leaks over from other purposes. So we’re on the cutting edge of technology here, with several roads one can take – or none at all, depending on your predilections.

    I believe it’s possible that some non-standard GBS treatments might work for some individuals but not all, or not in all circumstances. It’s not my intent (or in my interest) to further a rigorously controlled study with the usual double-blind criteria, but rather, to find out for myself what else might be helpful based on other people’s experiences. Hence I’m asking here about acupuncture and TCM, and I also have some interest in vitamin B12 supplements based on anecdotal suggestions elsewhere that this substance may encourage nerve regrowth. I’ve already modified my diet to include more Omega-3 fish and olive oil combinations – which is not a bad thing in general.

    If placebos work, send me to the nearest store and I’ll pick up a batch! Many medical treatments started before the scientific underpinnings where established, though they were not necessarily as effective as they are now with current refinements. It’s not in my interest to do nothing but “wait around” for the slow science to catch up, so as long as these other methods aren’t harmful, why wait? It’s not as though I’m skipping physiotherapy now, but rather, I’m interested to supplement standard treatments with other things which might help, and getting started early in the healing process seems like a good idea (to me, anyway). The TCM opinion is that their medical benefits also take time, usually much slower than Western treatments, but the latter sometimes doesn’t work for some people or has nothing much to offer.

    Despite controversy, acupuncture does have some grudging respect in the Western medical establishment as a useful tool to alleviate pain in some circumstances. Fortunately I don’t have much GBS pain now, just some residual foot tingling and numbness, so I’m more interested in finding out if it has additional healing properties for GBS. I do this by looking for other people’s experiences and I’ll summarize my findings here. Is anyone else interested in this, or have experiences to contribute?