Post-GBS Observations

July 22, 2010 at 9:36 am

Hi all. New to the board as a poster but, sadly, not new to GBS. At the age of 27, I had a catastrophic onset of Miller Fishers/GBS in spring of 1980 (descending paralysis). I never had a flu shot but did have, what we thought at the time, was a sinus infection. I had total paralysis of all extremities, double-vision, eyelids frozen open, left side of the face frozen, throat too paralyzed to even swallow, on a ventilator in ICU within three days of onset. In those days, the blood treatment had only just turned up in medical journals so most neurologists (including mine) weren’t using it yet. Nor was there any heavy duty physical therapy after I started to improve. Basically, once I was off the ventilator and sent home, I was on my own. There was improvement, enough that I’ve been able to work full-time over the years. But the pain, the exhaustion, the “hmmm, a bit tired today, better skip that activity or I’ll be unable to do ANYTHING for the next three days” is something I have dealt with for the past 30 years. One adjusts and it’s usually not too awful.

Unfortunately, the occasional residual indications have increased with age and are now constant. Yes, I’m still working full-time but it gets much more difficult. The pain and fatigue are no longer once in awhile if I overdue things but simply a factor every day.

My main purpose in posting is two-fold. 1). For those younger who are now in recovery and are fearful that they won’t be able to enjoy any of their favorite activities, don’t worry. You will start to feel better and you’ll have years to enjoy life. Now, you may have to baby yourself a bit more than your peers. If you feel tired, don’t push because nerve-damage, unlike sore muscles, isn’t something you can “work through”. When nerves are fatigued, they’re done and all you can do is rest them. But, if you use some common sense, you’ll have days, perhaps weeks at a time when you’ll feel pretty good and not even remember the weakness or shock of not having your body respond the way it should.

2) As you age and start to get the usual problems of aging (e.g., osteoarthritis), you may find the residuals increasing in occurence and severity. You must learn to read the symptoms so that you can be firm with your physicians. You are the first line of defense as your own advocate. I just learned this the hard way.

I have just been through two years of misery because my favorite doctor retired and I was in the care of an internist who “did not believe” in residual GBS. He considered things like that “figments of the imagination” and that one just needed to change one’s diet and exercise to “feel better”. In July 2008, I had a bad inflammation of the knee (good old osteoarthritis). Went to the doctor who then sent me to an orthopedic surgeon. The surgeon drained the fluid from the knee and injected cortisone.

Within two weeks, I was deathly ill. I could not even bend over to pick up the cat food dishes from the floor. I could not raise my arms above shoulder height due to the severity of the pain. I could not sit down on the lavatory stool without agonizing pain all the way through my body. My hands were in agony and I had very little dexterity (could not pop the lid on the cat food can). When I had a follow up appointment with the surgeon, he took one look at me, said I was “Systemic” and suggested that I see a Rheumatologist. To make a long story short, I was put on massive doses of Prednisone and Methotrexate and treated for Rheumatoid Arthritis for 18 months (although my blood work never did indicate an increase in the RA factor).

There was enough improvement that I could work but the combination of medication and the symptoms turned me into a walking pain-filled zombie. I wasn’t real happy with the Rheumatologist (she had a bad habit of not listening to my concerns) so I went to a different one who decided I didn’t have RA at all but was just clinically depressed due to the sore knee (which had occured the year before). He gave me a long lecture on how any severe illness can cause depression – ummm, I had GBS buddy, I never had depression with that, why would a bum knee suddenly trigger clinical depression, maybe it isn’t depression but just the heavy handed drugs affecting me due to post-GBS residuals? – In any case, he prescribed Cymbalta (I took one capsule and it felt like I had ice bees all through my blood system, took the next one and crashed to almost suicidal, didn’t help the pain so forget that experiment). In complete and total disgust, I threw out all the medications and got online to research some things. The first thing I discovered was that my favorite doctor had “unretired” himself and was practicing through the University’s medical school. Got myself an appointment immediately.

The second thing I discovered was that, in very rare situations, a cortisone injection can cause a severe reaction (from inflammation at the injection site to fully systemic). What I suspect I experienced was simply a massive shock to my already damaged nerves but, since GBS “doesn’t have residuals”, none of my doctors at that time would even consider such an idea. Obviously, I had to have a “new disease”. So, before you let anyone inject you with steroids, make sure that you and the surgeon DISCUSS the potential trouble of the stuff hitting your poor little axons that, if recent research suggests, are already working overtime to do the jobs of the ones lost to your GBS.

The best description I have ever received (several years ago from a young, resident neurologist who was giving me a test for an unrelated issue) is that after polio or GBS or anything that causes that kind of catastrophic damage, your entire infrastructure (nerves, muscles, blood system, organs) has been weakened and will leave you a bit more susceptible to aging and other illnesses. Doesn’t mean that it will happen, just that potentially you may have more difficulties. In my case, I would have developed osteoarthritis regardless (runs in the family), but, due to the MFS/GBS, it’s just happening to me a bit sooner and with more severity than it would have otherwise.

There seems to be a tendency by the medical profession to deny what to me is the obvious. I believe strongly that this is a case of Occam’s Razor (simplest explanation is usually the right one). Rather than decide I have RA or Fibromalagia or Chronic Fatigue Syndrome, let’s just call it what it is. GBS by any other name…

Anyway, I don’t know if this post will help or not. For those who have developed this dreadful stuff in more recent years, hopefully the blood therapy and radical physical therapy early on will help you later on so that the residuals don’t develop as soon or with the severity I seem to have. The main key is to try to keep yourself cheerful. I’m afraid you’re in it for the long haul and there isn’t a thing anyone can do to change the damage. In this case, you need to work to minimize the long-term affects on you. Diet and exercise (in moderation) will always help since you need to keep your overall physical well-being in order. It seems the post-GBS will find any chink in your system’s armor so it is imperative to do the common sense things that anyone does. I do know that the B-group of vitamins helps (particularly Thiamine). For those with osteoarthritis in the family, start hitting the vitamins that assist with bone (calcium, vitamin D). Be well and courageous.