Post Guillian Barre Syndrome Helpful Doc.
AnonymousJune 3, 2009 at 1:28 pm
This is my first post on the new board. I have not been here since the old board crashed a few years ago.
I had GBS in 1973. I was in the hospital with severe leg weakness after a respiratory bug. At first the Doc thought that it was a reaction to the medicine that he prescribed for the illness.
Fortunately, for me he did a spinal tap the morning of the second day that I was put into the hospital.
They spotted the protein signature and started watching me. For a few days my condition seemed almost stable. In the second week, things started to accelerate. First, bradycardia, which landed me in ICU, then more muscle paralysis, finally an emergency trach. to get me on a vent, STAT….the paralysis continued to move upwards with only my left eye under my control.
I was out of the hospital in 3 weeks. Back to High School in another 4 weeks, without ANY WALKING AID’S.
I thought I was out of the woods………:(
About 4.5 years ago, after taking care of my sweet wife, who came down with CRPS, a severe pain syndrome and working 14 hour days to try to hold on to our home, I started to feel the same wooden feelings in both feet that I had remembered so well from almost 32 years ago.
It only progressed up to my thighs and makes my endurance about 1/32 of what it used to be. I also have finger and hand weakness. What really is bad about this is the [FONT=”Arial Black”][SIZE=”4″]SEVERE PAIN THAT I GET IN MY THIGHS, HIPS, CALVES , FEET , HANDS AND FINGERS[/SIZE][/FONT].
After the “onset” of Post GBS , I knew that my 70k a year job would be history soon. Fortunately, my employer gave me a month to wind down my work.
This time period is when I found DR RICHARD BRUNO OF THE POST POLIO
Dan, a GBS Forum poster told me of him and that he was instrumental in helping him receive a quick disability rating.
He is a kind, caring Doctor who will help you in the second biggest worry after a relapse of GBS, or if you have Post GBS syndrome.
He is in New Jersey, so all of you in the east, this would be an fairly easy trip.
We had to fly from Arizona 🙁 in late January. But it was well worth it….
I had [SIZE=”4″]ZERO TROUBLE WITH GETTING SOCIAL SECURITY DISABILITY[/SIZE].
I am not trying to spam the board, but truly am glad that Dan told me about him and that my research on him also bore out Dans enthusiasm with him.
I will be happy to give any feedback or tips that I have found or had to engineer to help make my life’s large transition much more easy.
I have been in a very slowly improving phase for the last year.
I used to hike for 15 to 20 miles a day. I was very active and could easily out work two of my co-workers in a field that was both very physically and mentally challenging.
[COLOR=”Red”]NOW, JUST WRITING THIS SHORT E-MAIL IS TIRING.[/COLOR]
For those of us who are struggling with getting approved for disability payments, I am praying for you and would be willing to give you all the pointers that I have , but DR. BRUNO is a good start.
HE WROTE THE STANDARD THAT SOCIAL SECURITY USES TO EVALUATE POST POLIO SYNDROME AND HAS INFORMED THEM ABOUT POST GBS.
Having his chart in your disability medical records should be a big help in this battle that many of us are too weak or tired or our families. loved ones are worn out from picking up our duties to press on with this seemingly endless task.
I will be happy to help in any way I can with info and any thing I can pass on .I feel very fortunate and blessed that the disability struggle was not another heavy weight to carry.
AnonymousJune 3, 2009 at 4:45 pm
Thanks for sharing this. Hopefully somebody will read this a need your advice and get lucky getting treatment. I have heard of this doctor before! But I lived in the Tri State Region and they all are very close states together. So hopefully someone here will need the help~
AnonymousJune 3, 2009 at 10:45 pm
Hi: That is very interesting information that I hope will help others as well. I wonder if you know how this doc got interested in post GBS and if you know of any research on this topic he might have done. Many neurologists are still doubtful about the existence of post gbs. I believe it does exist but wonder if there is any attempt to do research to show it. Thanks. Jeff
AnonymousJune 4, 2009 at 1:48 pm
Wow! This sounds like my story. I had GBS in ’83 and have been struggling with the residuals for about 5 years now. I would be interested in any research or things that Dr. Bruno has to determine whether this is what I have…Post GBS syndrome…I am from Canada so would not have access to him but would love to get as much info as possible.
Keep me posted on how he is treating you. I could use the advice.
AnonymousJuly 21, 2010 at 3:34 pm
My name is Maureen and I live in Manitoba.
I had GBS in 1963 and contacted the International Foundation in 1991, when I began to experience what I thought was post GBS symptoms. I had polio in 1946 and belonged to a post-polio group in Winnipeg.
If you want to give me your email address and/or your phone number, I will contact you. I am on the Canadian Board and and have facilitated a support group here in Winnipeg for almost 20 years. It may be that I have information that would be helpful.
AnonymousJuly 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.
AnonymousJuly 22, 2010 at 12:42 pm
Bevgray et al,
My wife, ChicoLiz, was also told by her neurologist that there is no such thing as post GBS. In fact she was told that she does not have GBS, she HAD GBS and that she should be worked up to determine the cause of all of her increasing fatigue, decreasing strength and endurance. Most of the postings above reflect what I see as a trend. As GBS patients age, issues that could be ignored or overcome with effort begin to gain ground and now with the internet the information is getting out. Sooner or later the Docs must recognize that you are indeed accurate. Whether something can be done to allay the discomfort is yet to be determined. But, if they don’t recognize the problem no one will look for new solutions rather than rely on the same time worn but unhelpful treatments.
AnonymousJuly 22, 2010 at 3:01 pm
The trouble is that many neurologists don’t recognize the post-GBS issues since there was very little research done on it. Indeed, the last time I researched myself was back in 2002 and I found no new information. In Spring 2009 when I was battling the other specialists, I researched again. Not only did a number of Post-GBS articles pop-up this time, there was also information regarding the damage to axons rather than just the mylene sheath that was the only “acknowledged damage” when I first became ill and for many years after. Most doctors are unable to keep up with new information for a variety of reasons. This is why I stated that you, as patient or care-giver, is the first line of defense.
For your wife’s situation, you might want to Google Dr. Gareth Perry, University of Minnesota. He has started doing research into Post-GBS and has some articles that you can read/print off to show your wife’s doctors. They certainly proved informative to my “unretired” doctor who filed them carefully in my file. According to Dr. Perry and a number of others working in this area, fatigue and pain are very much a part of the post-GBS array of symptoms. While you want to make sure that she isn’t suffering from something else, you also must ensure that her symptoms aren’t relegated to the “it’s all in your head” mentality.
Having lived with this illness for so many years, I do want to take a step back and point out another issue I have had. It is all too easy to immediately assume that a symptom is post-GBS, grit your teeth, and go about your business. I almost missed a serious health issue over 10 years ago as I assumed (incorrectly) that it was just a new manifestation of an old enemy. You must be careful to make sure that your doctors neither ignore the GBS influence nor attach too great an emphasis on it. Very tricky balancing act at times.
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