aggressive treatment/risidual questions
AnonymousApril 17, 2007 at 1:33 pm
Thanks for your time. This is the first day I have posted to this website. I have some questions but first will share a shortened version of our story. On April 6th, 2006 my husband woke up with numb hands and feet. He also had lower back pain and a funny taste in his mouth. He went to work and didn’t tell me until later that night. I was afraid he was having a stroke at 44 years old, so I rushed him to an emergency room. The first one let us sit for 5 hours so we left. The second did a cat scan and blood work, told us everything was fine, and sent us home. The next morning he could hardly walk. Our family doctor told us to go to a specific teaching hospital in Milwaukee WI where they might be able to diagnose him more quickly. While in the ER a medical student told us he thought it was GBS. In fact, he talked with each doctor and visited us daily to make sure everything was going ok. We were so lucky. My husband was diagnosed with GBS/Miller Fisher within 2 days with the spinal tap, EMG etc. They even called someone in to do the EMG on Sunday and had a plasmaphoresis machine moved to the ICU (because the clinic was closed on Sunday) to start treatment immediately after diagnosis to halt nerve damage. He was in ICU for 2 days and never had to be ventilated. His neurologist never minded me calling him, even in the middle of the night. I wish I had known about this forum then.
His recovery, I’m told, was off the charts… but his treatment was more aggressive than anything I’ve run across here so far, which is why I wanted to share it with you. He was given 9 plasmaphoresis treatments within 2 weeks. Six were given every day for the first six days. Then 3 treatments as an outpatient followed by IVIG. He spent 11 days in the hospital. Was never completely paralyzed, but could barely navigate on a walker (I had to hold him up), and had difficulty using his hands. As one facial symptom would occur, another would dissipate. He had difficulty swallowing for a couple of days, couldn’t smile at all, and couldn’t close his eyes completely for quite awhile. I feel that the quick aggressive treatment saved him.
Our insurance wouldn’t cover a rehab facility so he did outpatient rehab (that we are still struggling to pay for but was well worth it), for about 1 1/2 months. We took a walk every day. The first couple of days he was in the wheelchair. Then he used a walker for a few days. He switched to the 4 point cane for a week and then he was on his own. Getting balance back was a little tricky. He is left with a slightly slowed neural response in his legs. He rarely feels it, unless quick balance is needed. His upper lip remains numb. He was back to work (a physical job) in just a few months.
We were so elated with his progress that we didn’t even consider residuals. Yesterday he told me that his lip feels worse, his left eye has been twitching, and the eyesight in it is a little different. He also was afraid he was feeling a little weakness in his hands with fingertip tingling. However… he thought that might be fear, but he wasn’t sure. He rested all evening after work and felt much better this morning. I’ve seen that many of you say that this type of thing is common and that rest is the key. Do you feel that way in his case. Should I be taking him to his neurologist? Is this just something he’ll have to deal with now and then? Do you think we should consider asking for another IVIG?
I respect your opinions. Thank you so much for your time!
April 17, 2007 at 2:52 pm
I too have had great difficulty in figuring out if my ten year olds symptoms are residual aidp symptoms or cidp. My son was dx in Oct. with gbs, he recvd. a five day course of ivig. His strength held without any additional meds. for 51/2 months (February). In January, Kevin joined a basketball league that had intense practice, maintained school activity, played with his friends etc. By the second week of Feb. he started to say he had the jelloie, wobbley feeling again. We went to the neuro., he said lets try taking it easy and see what happens. We did, he still was tired and fatigued, so the Dr. said perhaps it is cidp, and he set up an additional ivig by March 12. Well, on 3/8,3/9,3/10, Kevin all of a sudden started playiong like a mad man again, basketball,baseball, trampoline, the whole weekend, 6-8hrs. straight. I wanted to cancel the ivig. The Dr. felt that we should just continue with the plans. We did. Upon our admittance, the Dr. ordered an another spinal tap just to be sure that the protein level was in fact elevated again as in our initial dx. Unfortunately, after four tries, they were not able to get a puncture, so we just stopped and proceeded with the ivig. I do not know why it matters to me, but for some reason, I kept hoping it would be aidp. My doctor, as well as a couple of the moms on this sight have finally convinced me that since the ivig is working, just go with it. So, what I am saying (just an uneducated mom opinion, to be taken very lightly) maybe you could ask your Dr. for a repeat spinal to see if there is an increased protein level, if there is , then it could be cidp and ivig would help. If there is not it is aidp, however, there is not always an elevated protein. The way I now see it is why wait , try to make sure. If you wait thinking it is residuals and in fact it was cidp, more damage occurs. Although we were not able to get a spinal to confirm the cidp dx. the ivig has made a difference, so I guess I have my answer. You mentioned new sensations and symptoms, this would be a red flag to me. at the least, I would go for a check up. I know some of what I say sounds confusing, but honestly, gbs is confusing, no one person really presents the same, or follows the textbooks exactly. In our experience, we have had to figure things out by trial and error and by the help of others from this website. Good luck to you, I really do understand your frustration. Dawn 😮
AnonymousApril 17, 2007 at 3:07 pm
Cinnamongirl, Welcome to the Family. It sounds like residuals to me, please tell your hubby to get rest. Rest, Rest and more rest will help. Watch for an increase in symptoms, it is possible to relapse if pushed too hard and too fast to recover. It sounds like he is making great strides in his recovery so far though, tell him to keep up the positive attitude and good work. Feel free to ask any questions and vent whenever needed also. Take care.
AnonymousApril 17, 2007 at 6:08 pm
Hi Cinnamongirl, welcome! Just another opinion – but I would call his neurologist and get an appointment ASAP. I have CIDP and when my symptoms start, I go downhill FAST! If nothing else, a check-up could alleviate his fears (we all have them!). So glad you have a great neuro that is willing to talk with you…..that’s very important. Rest is also important. We try to overdo things and really pay for it. Thank goodness he has you to watch out for him and be so supportive. Good luck and good health!
AnonymousApril 17, 2007 at 9:07 pm
This sounds very much like residuals to me, however, as suggested before, it is important to keep your eye on it. When I am fatigued, stressed or have been overdoing things, I do become weak, my one eye especially droops,I too get twitches, and very much the same things your husband has been feeling. Sometimes it lasts for quite a number of days, and the debilitating fatigue can last weeks.
As for asking for treatment….If these are residuals from GBS, then IVIg or Plasmaph. will be of no benefit. These treatments are only given to try and stop the attack on the body and try, to some extent, to help with the healing. If it is residuals, the body is not under attack and doing these treatments will put needless stress on his body.
Have you read the papers/articles on the residuals of GBS? If not we will post them for you.
AnonymousApril 17, 2007 at 9:17 pm
odds are it’s his residuals. that means he is over doing it & must rest more every day & do less every day. any sudden major downtrend, then go immediately to the neuro. ivig can only help if gbs is active. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousApril 17, 2007 at 9:25 pm
Difinitely residue – I haven’t been on the site for months but I checked in tonight because of my intense residual symptoms. My neurologist said to expect symptoms to pop up for “at least” the next two years. I myself experience intense constricting of muscles so I feel I have to stretch or massage alot – especially hands and feet. It almost feels as if my hands were numb or asleep and this was the after effect. I find myself massaging or wringing my hands to cut the feeling many times. My beautiful family gave me one of those leg massagers from Brookstone for XMAS and I use it religiously every day to get me started. Its a matter of maintenance and a clear understanding of looking out for these minor complaints we might try to fluff off. I know how I felt before this occurred to me, its only been six months. I know what is a new pain or bothersome annoyance and what was there beforehand. I accept this and I look for ways to minimize it. Good luck and God bless.:)
AnonymousApril 17, 2007 at 11:03 pm
Thanks everybody for replying. It really helps to know that you all have experienced similar situations. Just wanted to let you know that after spending much more time resting, his symptoms are much better. The weakness and tingling in his hands are gone. The eye twitch is still there, but a little better. The numb upper lip is still numb but has been since his illness. He does have a slight ringing in his ears. Has anyone experienced that? I will make an appointment for him at his neurologist… just to be on the safe side. Thanks again! What a wonderful group you are!
I would really appreciate if you would post the articles on the residuals of GBS. I haven’t seen them. Thanks Ali!
AnonymousApril 17, 2007 at 11:18 pm
Hi Cinnamon Girl. I have been overdoing things lately at work can’t do as much as I used to 6 months ago and I get more twitches in the eyes and one thumb. I was on modified duties and today my Rheumatologist told me I have tendinitis in my hands. When I told him I was having a harder time to do the work and get tired more then usual he wants me on light duties.
I think some of it is do to my CIDP and pushing my body to a breaking point.
I think are body has a way of telling us we are doing to much.
Tell your husband rest and more rest is needed at times.
AnonymousApril 17, 2007 at 11:54 pm
Cg, I found this article extremely helpful, when reading the case studies at the bottom I wanted to shout out “That sounds like me!!!”
[SIZE=3][B]The vexed question of residuals in Guillain Barre Syndrome -[/B][/SIZE]
[SIZE=2]Lawrence Kaplan and Robert J. Gregory[/SIZE]
[SIZE=2]Article reprinted with permission from Kai Tiaki Nursing New Zealand Journal. First published August 2004 (vol 10, no 7).[/SIZE]
[SIZE=2]Numbers in parentheses: Please refer to the reference list at the bottom. [/SIZE]
[SIZE=2]Guillain Barre Syndrome (GBS) is a fascinating neurological disease, if such there can be, for it is rare, occurs with sudden onset, and creates acute effects, particularly on the peripheral nervous system. [/SIZE][SIZE=2]
Essentially, the peripheral nerves are attacked by the body’s defence system, an auto-immune attack, and as a result, the myelin sheath and axons of nerves are impaired. When sufficient damage occurs, paralysis may result. Neurological examinations, intensive hospital care and plasmapheresis treatments lead most people with a severe case back to recovery and rehabilitation in a few weeks or months. Dramatic as the onset and collapse may be, the ensuing years are dull in comparison. However, the nature of the disease can hide both the long-term physical effects and the psychological reactions. [/SIZE]
[SIZE=2]The residual effects of GBS have been noted for some time.(1) American researcher John Steinberg stated that, “Well over 50 percent, and probably up to 90 percent, of patients eventually reach complete or nearly complete recovery and resume their prior lifestyles. About five to 15 percent of patients will have significant long-term disability. Perhaps 35 percent will experience long-term mild abnormalities, such as foot drop or numbness.”(1) Steinberg also commented that patients might develop fatigue, particularly with sustained activity, and demonstrate poor endurance, even with normal muscle strength. This could lead to serious problems for those who worked long hours and/or had physically demanding jobs. [/SIZE]
[SIZE=2]New Zealand researcher Gareth Parry added to our understanding with a thoughtful analysis of what appears to happen physiologically.(2,3) Based on recent research, Parry stated that a study of 83 patients found 80 percent experienced severe fatigue that interfered with their life. Also and significantly, these patients experienced fatigue that did not seem to decrease over time. Meanwhile, he noted that these people had relatively normal strength. “The basis . . . is probably axonal degeneration.”(2) Further, he commented that, “surviving axons send out small branches called collateral sprouts that restore the nerve supply to those muscle fibres whose nerves have been damaged.”(3) [/SIZE][SIZE=2]
Thus while strength to a muscle stays roughly the same, the nerves that are restored are less strong, and so the efficiency of the muscle is reduced, resulting in fatigue. In a recent presentation, Parry noted that “Residual effects from both GBS and CIDP are much more common than has been generally reported.”(2)[/SIZE]
[SIZE=2]Recently, New Zealand psychologist Cecilia Bourke noted that 93 percent of her sample of 44 persons who had GBS reported varying residuals.(4) She found that 38 percent were mildly, 50 percent moderately and four percent severely fatigued. Pain was reported by 66 percent, nerve tingling by 70 percent and reduced mobility by 77 percent of the participants. In addition, 84 percent claimed muscular weakness, while numbness was felt by 66 percent. Interestingly, a remarkable 39 percent of the 44 persons interviewed claimed to experience all seven of these symptomatic problems. This finding is contrary to the frequent assurances that, after initial acute phases of GBS, recovery is total. Given that Bourke found anxiety and depression were within a normal range as measured by psychological testing, the large number complaining of physical residual effects was surprising.[/SIZE]
[B][SIZE=2][SIZE=3]What exactly is taking place?[/SIZE] [/SIZE][/B][SIZE=2]
What may take place is that the myelin sheath in nerves and the axons themselves are damaged from GBS. Some of those wounds recover, heal and the person then gets on with their life. Some of the damage, however, does not heal, in particular the damage in axons. What may occur then is that relatively weak collateral nerves take over the transmission duties for nervous system messages. These alternative circuits through the nervous system have to do extra duty to replace the functions of the axons of nerves that no longer work well. Those collateral nervous circuits are simply not as strong or as resilient, and are simply not so capable as the originals. [/SIZE]
[SIZE=2]Therefore, when a person with GBS-damaged axons and nerve tissue exercises, these collateral nerves are rapidly overloaded, and slow or even stop functioning fairly quickly. The person comes to a screeching halt — a neurologically induced crash. Others may look at the person and say, “You are tired and exhausted and fatigued,” thinking that it is muscles and overloaded muscles that will recover easily with rest. However, it is not the muscles that are faulty; it is nerves that are limiting functioning abilities. Thus there are significant and real differences in the cause and consequences of fatigue. Even those with GBS may believe they have tired muscles, for muscular tiredness is a common experience. That does not seem to be the case, however. The nerves just can’t handle the extra exertion, and when stressed, they do not recover as quickly as muscles do. Tests for muscular strength show up just fine, for the muscles do work and are possibly or even probably stronger than in other people. But the nerves are rarely, or not tested, or suspected. [/SIZE]
[SIZE=2]Some of those nerves affected are essential to lung function and breathing and that may account for developing shortness of breath. Even though individuals may experience this effect, they may not be able to explain it to their family, doctor or friends. These people have no experience other than muscular weakness, and therefore, they cannot understand that there are differences in cause and effects. That may be one reason why those who have had GBS are rather unique![/SIZE]
Cont. in next thread, too long to post in one.
AnonymousApril 17, 2007 at 11:56 pm
[U]Case A[/U]: David, aged about 50, was carrying an extremely heavy and stressful workload. One day, he noted tingling in his feet, then peripheral neuropathy. His physician claimed, “She’ll be right,” in typical Kiwi optimistic fashion, and David carried on. With some walking and breathing difficulties, acute leg pains, and generalised nervous aches and pains, David continued to work, albeit at a reduced and less effective pace. He noted that he had virtually no knee reflexes, that he slept 14 hours a night and was still exhausted, and endured a variety of “system problems,” such as diverticulitis, thyroid failure, and depression. A visit to a different physician led to laboratory and neurological tests, and a diagnosis of GBS, nearly a year later. David began thyroxine treatment, but there was nothing that could be done at that late date for the GBS, nor for continuing symptoms. [/SIZE]
[SIZE=2]For the next 10 years, David continued to have extreme leg pains, generalised weakness, fatigue and tingling sensations that sometimes kept him awake at night. Gradually these aches and pains left, but then reoccurred periodically. The symptoms abated for the most part after 10 years. But, at about 15 years from onset, David noted shortness of breath, a marked lack of endurance even though he retained an ability to handle tasks that required muscles, fatigue, and the return of some tingling and other painful sensations. Currently he has concerns about the trajectory of the disease and what may lie in his future. [/SIZE]
[SIZE=2][U]Case B[/U]: Philip contracted GBS in 1981. He was ill for two or three weeks with flu-like symptoms, then diarrhoea, and numbness of legs and fingers. Slight paralysis of his legs followed. This progressed without his doctor being concerned, until he became about 30 percent paralysed. It was at this time, the end of the third week, that his medical practitioner hospitalised him. He was promptly diagnosed with GBS. Due to the severity of the disease, and as it rapidly progressed, he spent the next two weeks in cardiac intensive care. Three weeks’ nursing care was followed by two weeks’ rehabilitation. Plasmapheresis was not an available treatment at that time. At week six, Philip was released from hospital, against the doctor’s orders, but he did continue outpatient rehabilitation for another eight weeks. [/SIZE]
[SIZE=2]From 1982 through 1983, Philip gradually increased his work activities to 10 or even 14 hours per day, plus included bicycling and mild sports as part of his continuing self-rehabilitation. He hoped to build greater endurance. From 1984 through 1994, Philip succeeded and led a fairly normal life, but still felt various residual effects, including constrained breathing, frequent and fast onset of fatigue, sudden feelings of complete exhaustion, and tingling sensations between his shoulders. He also noted back and leg soreness, aching knees, and persistent discomfort when laying one knee against the other. Philip also found he had clumsy feet and fingers. He noticed squeakiness in his voice.
From 1995 through 2002, Philip led a very active lifestyle, with reduced impact from the GBS residuals. He worked eight to 12 hours per day, led a sports club, and engaged in physically demanding sports between eight and 20 hours per week. Symptoms such as constrained breathing, fast onset of fatigue and exhaustion, and back and leg soreness were rare. Though he still had tingling sensations between his shoulders, he had no aches in his knees, and only occasional discomfort from knees adjoining or becoming clumsy. He stated that although the residuals had abated significantly, when they occurred, they were intense. Symptoms lingered, and quickly reappeared if and when his activity level decreased. [/SIZE]
[SIZE=2]In 1998, Philip was diagnosed with a heart murmur. In 2000, he had sinusitis and prolonged bouts of upper respiratory infections, requiring surgery. In 2003, the heart murmur led to a repair of the mitral valve, and during his period of rehabilitation, GBS residuals returned in the form of increases in exhaustion, sudden onset of fatigue and constrained breathing. Now aged 48, he hoped for a quick and easy recovery, but that did not happen. Six months later, he felt he had regained only half of his activity levels. He suffered soreness at the incision site, bouts of sudden fatigue, and frequent onset of constrained breathing. An extensive series of diagnostic tests revealed nothing. His medical professionals, knowing little about GBS, let alone about long-term residuals, had no opinion regarding this conclusion and deferred to a diagnosis of “de-conditioning”. This ongoing physical incapacity, mixed with the medical professionals’ inability to accept the relevance of GBS, brought on depression as well. Ten months following surgery, a significant return of GBS symptoms was evident, including “crashing” and extreme fatigue after even mild exercise. These symptoms collectively were sufficient to be rated as debilitating.[/SIZE]
[SIZE=2][B]What can be done?[/B]
GBS symptoms and residual effects do present a challenge, and are very important to the individuals concerned. Nurses can help in a number of ways. Perhaps the first and most important point is for nurses to be aware that those who have had GBS are few and far between, that most recover and that persistent optimism is valuable. [/SIZE]
[SIZE=2]In addition, however, it is important to really listen to GBS patients, whether in an acute stage, or throughout the rest of their lives. Their bodies and nervous systems have been affected, and they may well have quite unique problems and issues to face. As with other invisible disabilities, families, friends, neighbours, work mates, and even health care personnel, may ignore complaints. The continuing pains, aches and fatigue that those who have had the disease report are real, and should not be lightly dismissed or ignored. Individualised treatment plans and actions, careful, patient instruction about anatomical and physiological terminology as related to their case to help them communicate and make sense of the unusual sensations and deficits they may encounter, and empathy for these people will all prove helpful. [/SIZE]
[SIZE=2]Further research can be of value to patients, families, and other caregivers, for not enough is known about recovery and rehabilitation from GBS. Certainly the long-term effects are not well understood, and need to be studied.[/SIZE]
1) Steinberg, J. S. (1998) Guillain-Barre Syndrome: An overview for the layperson. Wynnewood, Pennsylvania: Guillain-Barre Syndrome Foundation International.
2) Parry, Gareth J. (2003a) Residual effects following Guillain-Barre. The Communicator, GBS Newsletter, Spring, 5-6.
3) Parry, Gareth J. (2003b) GBS and CIDP — what’s new? Proceedings: Inaugural Conference of the Guillain-Barre Syndrome Support Group New Zealand Trust, 24-27 April, ed Bob Stothart.
4) Bourke, C. (2003) Psycho-social aspects of GBS. Proceedings: Inaugural Conference of the Guillain-Barre Syndrome Support Group New Zealand Trust, 24-27 April, ed Bob Stothart.
AnonymousApril 20, 2007 at 7:57 am
Just wanted to let you know that I took my husband to his neurologist yesterday. The neuro. was a little concerned that the symptoms are only on the left side of his face so an MRI will be done today to rule out stroke. He also reminded us that GBS is likely to peak in about 8 days if it were a reoccurance. Since we are 5 days into this and the symptoms are getting better not worse… things are looking up!?! The sad thing is his smile is affected again.:(
I also wanted to pass on a tidbit of information that we never knew before. The neuro. said that residuals are often worse in the heat. Nerve signals are slower in the heat and if there is any disruption in the myelin, it will be more pronounced. That makes sense to us. My husband has been working outside since he went back to work. We live in Wisconsin… so until recently it has been cold. He’ll have to be careful this summer!
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