The Myth and The Truth
AnonymousSeptember 27, 2010 at 2:18 pm
Answering a thread by someone who did not want to hear negative things, I realized the myth that GBS patients usually recover 100% is alive and well. Countless studies done in the last 20 years have disputed this, yet it continues to be promoted by many in the medical community. Those with GBS now, and those who suffered acute attacks years ago, are still battling apathetic and uninformed doctors.
34 years ago, I was told not to worry; that I would recover 100%; that having GBS was like having a really bad flu. I did get better, thank goodness, and went on to lead a normal life. I had “residuals” but I didn’t think GBS had anything to do with them. After all, I recovered 100%. When I had fatigue that would hit me like a hammer, doctors ran a myriad of tests but could find no medical reason, so it was “all in my head.” When my feet would feel fuzzy, or my hands, or that one spot on my face or upper back, I was told I needed tranquilizers. When my feet and legs began to weaken, I was told I needed to exercise more, so I did.
( Years later, I would be told that vigorous exercise was not a good thing to do.) Then, after many years, I developed more neurological problems, and after more tests, I was finally told that we now know that GBS damages nerves much more that was previously thought and that I was suffering from a “late onset progressive deterioration”. To top it off, I was told that nothing could be done. So, I found this site and have found others who followed the same path as I have with GBS. I was not alone.
Over the years I have been asked to speak to GBS patients and their families. I offer them support, what knowledge I have of GBS and direct them to places where they can read studies and articles themselves. I tell them the truth, that GBS is not predictable. Most people recover enough to lead normal lives, but may be left with minor problems. And some are left with severe disabilities. I tell them to always remember how bad it was and to to be thankful for every improvement, no matter how small. I once had to tell a family that their elderly mother, who had been on a respirator for over a year and a half, probably was not going to get better. Doctors kept repeating the myth that she still had a good shot at recovery, so the family kept searching for the right treatment, the right hospital, for the magic pill that would make her “normal” again. They nearly went bankrupt. No one wanted to tell them, so I did. They were forever grateful. She died a few months later but at least the family knew that they did all they could. The lack of proper treatment did not kill her, GBS did. You see, the problem with continuing to hide the truth about GBS makes people think that they are not trying hard enough; that they are somehow to blame for their lack of a 100% recovery; and it causes GBS patients to become frustrated because no one believes they are still suffering. GBS is a life threatening and life altering illness and, though it is rare, the continued ignorance of many in the medical community is unacceptable as is the continued misinformation about GBS.
AnonymousSeptember 27, 2010 at 3:15 pm
I had a severe case of GBS & it nearly killed me & my neuro said he thought I would never get out of bed, Well now I walk with the help of arm cuff crutches & braces that go in my high tops that come up my leg as far as a crew length sock, If I want to walk I must use these items.
I had a neurologist at Case western university hospital, my neuro, & my family dr tell me that this is how I’m going to be. I told my mom I guess I have to learn to accept this, & she said yes.
I am thankful I can walk even if its with the help of medical devices, because being disabled is alot better than the alternatives !!
I first fell on Halloween in 2006, & was fine for a week except for the tingling, then got sick for 1 day & then the weakness set in & was falling more often & I was diagnosed on Nov ,2006 with GBS.
So I’m coming up on 4 year anniversery, I’m disabled , & I can walk with help, & I understand this is how it will be for me, like mom said it’s better than the alternative. Yes I went through a year of hell before I could come home, but I’m learning to accept & I live my life each day by my quote at the end of my reply.
AnonymousSeptember 28, 2010 at 1:12 am
What an excellent post, I agree with everything you said. When I was first sick there were many on the forum (almost 8 years ago,) who kept implying that those who were not making a full covery were doing something wrong. The old “blame the victim” syndrome… I was such a severe case of CIDP that Mayo told me after 4 months there that there “was nothing more they could do for me.” In their words I was terminal. But people kept telling me to get monthly IVIG & I would be just fine. I was having IVIG twice a week, 1,000 mg of solumedrol & for 12 weeks I was getting all three treatments every Friday. First the plasmaphersis, then the IVIG, then the solumedrol. I felt more dead than alive, but still I was total care. Cytoxan would finally arrest my CIDP & allow some of my nerves to heal…
The severity of these illnesses depends on so many variables…age at onset, if axonal damage was suffered, how hard a person is hit by GBS or CIDP, treatment options available, etc. People ask questions like, when will I walk again? When will I get the use of my hands back? The answer to all of our residuals is “When the nerves heal!” It is no miracle when someone tells their success story & says that they have made a full recovery, it merely means that they had what is called the classic case of GBS & all of their nerves have healed. But I do believe that even many of these people suffer some weakening as they age. Because once these nerves have been damaged, they are never really the same again, not like the ones we are born with. I have my own theory that this is where the fatigue comes in; push weakened nerves to function all day, for years & years & it exhausts them.
It is wonderful to have a positive attitude on this forum, but for anyone to suggest that they will accept nothing less than a full recovery is being unrealistic. It has all been predetermined from the onset. Yes, many do make a full recovery, but they usually are not the ones we tend to see on the forum. If all of the posts here have to be positive, we would have very few members. People come here for help, & they should be able to complain about GBS or CIDP all they want. That is what forums like these are for, if one wants social networking, go to Facebook or My Space.
AnonymousSeptember 28, 2010 at 9:55 am
I hope you are doing better. I had axonal damage, but because nerve conduction studies were in their infancy in 1976, I did not know until 26 years later. According to the studies I have read, nearly 75% of people who have GBS severely, suffer axonal damage. And those nerves do weaken as we age, even if we had some healing early on.
I would love to be able to tell people that GBS always has a good outcome, but the facts do not support that. The literature regarding the rates of 100% recovery are not supported by studies done in the last few years. A study done by Dr. Garreth Parry showed that 89% of GBS patients suffer from bouts of severe fatigue the rest of their lives. Fatigue was a main complaint even for those who were affected mildly. Late onset progressive deterioration, similar to post polio syndrome, is just now being recognized in GBS patients. Pain, numbness and muscle weakness has been reported in the majority of GBS sufferers more than five years later. Hiding the truth about GBS recovery serves no one. Many people suffer alone because their doctors and families think that they are cured because they seem to “look” okay and the medical literature is not up to date.
I have even started to educate my doctors by giving them studies and articles on GBS. We must be our own advocates. And if someone wants to come on this site and vent or whine, I say WELCOME! You are among friends and people who do understand what you are going through.
AnonymousSeptember 28, 2010 at 10:54 am
bommerbabe & Pam,
People on the forum do give encouragement for recorvery to new members, as to how much recovery or how fast it is we can’t answer as each case is different.
If the forum were only positive without the negative side of GBS/CIDP we would be giving false hope to those that don’t recover 100% or those that are living with residuals.
AnonymousSeptember 28, 2010 at 11:48 am
Even though I had the cytoxan in 2003, I did not make a full recovery. I have mostly numbess & a lot of nerve damage below the knees, must wear AFOs to walk & suffer a lot of foot pain. My hands are not normal either, partial numbness & no fine motor, writing is still difficult, as are buttons, zippers, sewing a button. I can walk with a cane, but with very weakened knees & hips; I cannot bend down to pick something up. I suffer a lot from fatigue on a daily basis, must sleep about 12 hours to feel somewhat normal. That is the reality of what CIDP has left me with.
But you will rarely see me come on this sight to complain about my residuals. I accepted where I am at a long time ago & live what I consider a very good life. How excited I was to get my driver’s license back in 2005, to start walking again in 2004 (albeit with two canes & AFOs,) when I was able to start using my hands again partially after 2 1/2 years. I have accepted my limitations, it just got to the point where I had no choice. I lost my teaching job & all of my sports, but I moved on & made changes. I no longer downhill ski, skate, take walks (just to take a walk), play tennis, etc. But I am very involved with water aerobics, can still drive a snowmobile, get up to our cabin, cruise in our boat, & we do travel a lot. I do not believe I let this illness destroy me, when with friends I prefer not to talk about it at all. That is not what they want to hear, they want to hear good things.
I believe that that is one of the major purposes of this forum, to have a place where we can vent if we need to. Or to help out the “Newbies” as they come on. I am happy with life & after having such a severe case of CIDP, it is really a miracle I am still here to enjoy life. Dr. Parry calls me his miracle, that makes me happy! Now, I must go & get ready for my water aerobics class, which I have been in for over 5 years & no one cares that I must use a cane around the pool & also wear my AFOs.
AnonymousSeptember 29, 2010 at 5:04 am
Excellent responses to this thread. Just as with cancer patients, a support group aids greatly in recovery. No one can understand like someone who has been there!! Yes, most of us “olds” have come to a reconciliation of where life has taken us but I well remember how early on it was a saving grace to come here to “vent and cry”and ask questions/test out theories 😀 And here was my new family who could understand and cared and helped me to survive. I am amazed that 15 years has gone by!! A BIG shout out of THANK YOU to each one who is a part of “The Family” 😀
AnonymousSeptember 29, 2010 at 7:29 pm
I mean, after all, given this set of issues? You are bound to ‘drop’ now and then. Even when you get to walking ‘normal’ again? Tote that cane! The bad stuff can and does come on hard and fast when you least expect it. Results of ‘no cane’? Are NOT fun!
Docs can’t answer IF we can or will get better? Because we are NOT scientific experiments, kept in some sort of ‘controlled’ environment, nor are are treatments totally consistent with one another. For ‘analyists’ to try and collect data on US to try and determine some similarities? Well, it’s bound to be all over the map! Not to mention that each and every doc comes into practice with HIS/HER own set of training/experiences and biases.
Get five neurology experts in this field to look at five different sets of patients’ tests and studies? For each and every patient? You will get five different diagnoses for each and every patient…let alone how to treat them!
It’s the same w/treating cancer? You just have to go and find the one[s] you can get along with who are on the ‘better’ or ‘best’ lists…then HOPE and HOPE HARD!
When I got the now CIDP [other docs, did nay saying? to this diagnosis?], Then the cancer… I knew that by the time I got CIDP diagnosis it was over a year… damage can and is done in that time! But I kept at it before diagnosis, because That CIDP was progressing, and The wisdom of many here and some gone taught me to KEEP AT IT, GET SMART ABOUT IT and learn to ask all the right questions!
I’ve been able to fend off the worst ‘demons’ for almost 8 years? I consider myself fortunate to have that extra time-of mobility, semi-normalcy and chances to just appreciate LIFE! IF you look at all my past posts? You should find that I never go MY PAIN IS WORSE than your pain…ever! And, I hurt..a lot? To the point when I am really hurt, hi doses of morpheine don’t do a thing! Soo? I take it as it comes, get on with it all, wrestle with getting about, and like many others? I’VE GOT MY CUP! I’d like it full? But at least I’ve got the cup to catch the good things in life and tilt at my windmills! Poor Dulcinea! She’s getting run-down.
Hugs and hope to all! Never lose faith in yourself and what your body is telling you! Second and even third opinions are cheap compared to a non-diagnosis!
I think I’m gonna walk the house stomping my cane into the floor while I get around, HARD! It’s therapy.
AnonymousNovember 19, 2010 at 3:11 am
The MYTH is alive and well !!! The Drs. know they can’t help us and they can’t toot their own horn for being GREAT Drs when they look GBS patients in the eyes and can’t heal us. They are scared to death to prescribe any strong pain meds, because they think they will get a reputation for being, ” Just a pill pusher. Soooo, they will say the GBS residuals are in our mind, or we don’t want to get well. I really get mad at them for being this way.
I hate to get started on this topic as it just get me fired up and I want to choke someone.
God bless all my good friends here, and boomerbabe, I count you as one of the best.
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