AnonymousApril 3, 2007 at 4:37 pm
My healthy+active mother admitted 2/26/07 Overlook hospital with sudden severe weakness of arms[tingiling] and legs,and voice was a whisper.They discovered pneumonia[MRI+xray].Weakness got worse no arm or leg movement ,consulted neuro,MRI,scans,xrays, spinal tap done was + protein, nerve conduction was indicitive GBS. She began steroid[IV},plasmapheresisx5 times, then IvG 5 times. neuro MD said mom has axonal GBS. Improvement seen and sent to Kessler Rehab NJ, was able to walk w/walker for few feet, was able to feed herself, things improved for a few days and then, her legs were like lead, tingiling returned to hands and palms, readmitted Overlook hospital March 19, her legs/pelvis were drastically worse then a few weeks before. Another spinal tap[+], muscle and nerve biopsy[3/29] being analyzed Columbia Med center NYC[no results yet],She developed DVTs[bloodclots in legs] and a blood clot in lung. Seems 1 setback after another and she has finally lost hope and faith of recovery.Her spirits are at all time low [ on antidepressant 3/30] Her and my Dad feel that she will never recover and have asked for discharge to home to spend her final days. Its extremely frustrating to see this happen, this syndrome is a curse. Any ideas ?Or words of wisdom for my mom?
AnonymousApril 3, 2007 at 5:29 pm
Welcome to the forums! I am wondering how soon they gave the IVIg after the Plasmapharesis, just curious if the gave it to her because they thought that the Plasmaph. wasnt working.
Lately my favorite article from “The Communicator”, seems to be [I]Whats in a Name?[/I], the one below. It explains what the differences are between the 3 syndroms and what treatments are usually given for them. If this is one of the ones below, judging by her ‘replasing’ so soon, it will be worth discussing SIDP with the neuro, however if little is known about GBS and CIDP by many doctors, then I wouldnt think SIDP would even register on the radar. Obviously i am no expert, but judging from the article, it sounds very much like your moms case – however down the line, you may find out something new.
[FONT=Arial][B][SIZE=5]What’s In a Name? Important Differences[/SIZE][/B]
[B][SIZE=5]Between GBS, CIDP and Related Disorders[/SIZE][/B][/FONT]
[I]David S. Saperstein, M.D., Phoenix Neurological Associates, Phoenix, AZ[/I][/SIZE]
[FONT=arial][SIZE=2]This article will discuss the differences between Guillain Barre Syndrome (GBS) and related conditions. Recently I have seen cases where misunderstanding of these concepts led to less than ideal management. I have also frequently observed confusion about terminology among patients and physicians.
[/SIZE][/FONT][FONT=arial][SIZE=2]GBS may also be referred to as acute inflammatory demyelinating polyneuropathy (AIDP). This emphasizes the acute nature of this disorder: symptoms come on abruptly and progress rather quickly. Symptoms stop progressing, often within 2 weeks, and usually not more than 4 weeks. After a period of weeks to months, patients then begin to experience improvement. Although the majority of patients with GBS will do rather well, not all patients will recover fully and may experience chronic weakness, numbness, fatigue or pain. Once symptoms stabilize, there is rarely any further deterioration.
[/SIZE][/FONT][FONT=arial][SIZE=2]Chronic inflammatory demyelinating polyneuropathy (CIDP) produces manifestations similar to GBS, but there are important differences. Symptoms tend to come on more slowly and progress for a longer period of time. Patients may stabilize and recover, but then experience a return of symptoms in the future (this is referred to as the relapsing form of CIDP). Alternatively, patients may experience progressive CIDP wherein there is slow, continuous progression without a period of stabilization. By definition, if there is progression of symptoms beyond 8 weeks, the patient has CIDP. Patients with CIDP often need sustained treatment, but many experience complete remission or at least improve and stabilize on medication.
[/SIZE][/FONT][FONT=arial][SIZE=2]A less well-appreciated disorder is subacute demyelinating polyneuropathy (SIDP). SIDP is defined by a progression of symptoms for more than 4 weeks but less than 8 weeks. In other words, the time frame falls in between that of GBS and CIDP. This is an uncommon but interesting group of patients. It is necessary to identify these patients because there can be important considerations regarding their treatment (see below).
[/SIZE][/FONT][FONT=arial][SIZE=2]The most important reasons for distinguishing between GBS, SIDP and CIDP are to help anticipate outcome and to determine the optimal therapy. Patients with GBS are usually treated with a course of either of two therapies: intravenous immunoglobulin (IVIg) or plasma exchange (PE). IVIg and PE are equally effective (and there is not an advantage to using both treatments). Typically, a single course of treatment is given, usually as soon as possible after diagnosis. The goal of treatment is to hasten improvement. Patients with GBS will improve without treatment; IVIg or PE just accelerate recovery. As discussed above, the full extent of recovery will not occur for many months (or even years). This is an important point that is often not appreciated. Some GBS patients certainly do improve quickly and dramatically after being treated with IVIg or PE. However, most do not. Therefore, repeat courses of IVIg or PE or treatment with a different therapy are typically not indicated.
[/SIZE][/FONT][FONT=arial][SIZE=2]A number of GBS patients will have permanent symptoms. These symptoms are from nerve damage. IVIg and PE treat inflammation of the nerve, but do not help with nerve recovery. Nerve recovery can occur, but takes time. Persistent symptoms do not mean a person has CIDP. CIDP is diagnosed when there is continued [I]progression[/I] of symptoms (not continued [I]persistence[/I] of symptoms).
[/SIZE][/FONT][FONT=arial][SIZE=2]In contrast to GBS, CIDP patients are treated with repeated courses of IVIg or PE (or daily doses of other medications such as prednisone, azathioprine, cyclosporine or mycophenolate mofetil). Without sustained treatment, patients with CIDP will usually relapse and continue to worsen. Over time, the amount of medication can be decreased in many patients and, in some patients, treatment can be discontinued entirely.
[/SIZE][/FONT][FONT=arial][SIZE=2]Finally, we come to SIDP. Treatment is usually as for GBS: a single course of IVIg or PE. This will be sufficient for many of these patients. However, some SIDP patients are actually CIDP patients who got treated before they could declare themselves by progressing for 8 or more weeks. If they are not watched closely, patients with SIDP can quickly deteriorate. These patients will need more sustained treatment, as in the case for CIDP.
[/SIZE][/FONT][FONT=arial][SIZE=2]Now that I have defined the syndromes, I would like to give some examples of how incomplete appreciation of these disorders can lead to misunderstandings regarding therapy. I have seen several patients with SIDP diagnosed with GBS and treated with a single course of IVIg or PE. That is appropriate, but then when these patients subsequently worsened after a few weeks or months, they were either not re-treated or they were repeatedly treated with just a single course of therapy. They would improve and then worsen again and again. In such cases, continued treatment is needed to stabilize these patients (such as IVIg administered every month). A different error is to give a GBS patient IVIg or PE to treat chronic, stable, persistent symptoms. These treatments will not help. Recall that the persistent symptoms are due to damaged nerves. At the current time, we do not have therapies to restore the damaged nerves (but there are medications that can be used to help nerve pain).
[/SIZE][/FONT][FONT=arial][SIZE=2]Hopefully this review has helped clarify the distinctions between GBS, SIDP and CIDP and illustrate the differing outcomes and treatment approaches for these disorders. [/SIZE][/FONT][SIZE=2]
[B]Article from the Summer 2006 GBS Newsletter[/B][/SIZE]
AnonymousApril 3, 2007 at 8:09 pm
The IVIg was started the following day after the plasmapharsis because she wasnt getting any better. My Mom is 2 hours away so I call her twice daily and visit every 2days if I can[I have kids!] The article was interesting, and I printed it.for my reference. Does seem like SIDP. Her neuroMD is also a neuro med prof.from Columbia Hospitak +med school[NYC}.She told her that when any symptoms reoccur she needs to get a bottle IVIg. Still awaiting biopsy results. LONGEST month of my life. Thnaks for your advice.
AnonymousApril 3, 2007 at 9:15 pm
the plasmapheresis [pp] washes out the ivig & should not be given for weeks after the ivig. each has a 70% chance of working on any one gbser. steroids are counterproductive to gbs. they are only used for chronic gbs [cidp]. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousApril 3, 2007 at 9:26 pm
When the Plasmaph. or IVIg is given to the patient who has been diagnosed with GBS (and probably SIDP), you will not see an improvement immediately, it may takes weeks to see improvement. The reason for giving the treatments it to try stop the attack on the myelin sheath or nerves, and possibly accelerate recovery. Unfortunately a change is, in most cases, not seen immediately as it is not a medication to cure the syndrome as such, but as I said, stop the attack. In my case it took over a week (I need to check but it could have been around 2 weeks) to start seeing some kind of improvement due to the plasmaph.
If she gets worse as you discussed, then they do need to do the IVIg as they suggested, obviously as soon as possible to stop further damage to her nerves.
Please tell your mom about the forum, it is so important for the patient to know that their are people out there thinking of them who had the same as what they do. I wish my parents had the support of people who had been through the same thing. Please keep us updated on your moms progress
AnonymousApril 3, 2007 at 9:58 pm
Welcome to the forums.
The one sentence you wrote about sending Mom home to spend her final days
is not going to happen. She will recover, but it takes a very long time. Your Mom is still in the beginning stages of GBS, that is why she was still getting worse. She will get better please keep reassuring her of that fact. Tell her all about the people here who have been where she is now and some totally paralyzed for months to a year. What Neuro is taking care of your mother, we have a few that come highly recommended. Mom also needs physical and occupational therapy everyday to keep her muscles from atropying.
Does she have any pain? If yes then the Drs should start her on Neurontin, Lyrica, or Cymbalta. They are used by alot of people here for their pain caused by the nerve damage. Steroids are usually not given to GBS patients because it doesn’t work for them, it will work for people with CIDP.
[B]Around here GBS stands for Get Better Slowly. She is [/B]
I’ll will keep your Mom in my prayers.
AnonymousApril 3, 2007 at 10:20 pm
Hi Ann, welcome to the Family, and please extend that welcome to Mom and Dad also. GBS/CIDP is not a death sentence unless the patient gives up hope and faith. there is a small percentage of people who do die from complications of gbs though, its 5 to 10 %. has your mom been receiving levonox or any other blood thinner injections? it is important that gbs patients rec those while they are down and not able to move. along with epc cuffs. please don’t rush to conclusions, have patience, there is no way to hurry the recovery process after gbs. you need to have a positive attitude around your Mom. it is the most important thing that the family has to do everyday. keep her up to date on news events, weather, family matters and her health situation. don’t candy coat the truth and don’t hide anything from her either. she has an idea of what is going on with her body, and she needs to know she is not going crazy. music is relaxing, books on tape, movies and so forth help her to pass the time while she is resting. it is also good for her to have down periods-time for her to cry and feel sorry for herself. i sometimes do it for a few mins everyday or whenever i want to. it helps to keep the feeling intact. please give your Mom a Big Hug for me and take care of yourself, your kids and make sure your dad has his time. take care.
AnonymousApril 4, 2007 at 4:42 am
I was in an induced coma for 5 days and when i came round i was totally paralysed apart from being able to partially open 1 eye. You cant get much lower than that but i went on to make a complete recovery to the extent that i was back at work in less than 6 months. Not everyone is that lucky but most do go on to make a good recovery. There were days when i didnt think i could go on and if someone had offered me an easy way out i probably would have taken it. I am go glad i got through those days as I had no idea i would be back to normal so soon. if anything, i feel i am better off having had GBS in many way and have learned so many things from my experience.
Yes people can die from GBS but normally from complications such as pneumonia (which i also had). It is awful feeling so helpless and trapped but it is not a death sentence. and in many cases it is not a permanent disability so there is hope of recovery unlike people with spinal cord injuries etc. Let your mom know there are many of us here who have been through what she is going through and no one blames her for how she is feeling. But tell her not to give up hope as we have all lived through GBS to tell our story and are looking forward to the day she can come on here and share her story with us too.
AnonymousApril 4, 2007 at 7:44 am
My Moms neuroMD is Dr.Maria Alexianu MD,PhD Clinical Asst.Prof Depmnt Neurology NYU, another practice in Summit NJ.[url]www.summit-neurology.com[/url] . Since I live 2 hours away and I have a neuro nurse sister in Dallas we communicate via email w/Dr.Maria,or I catch her when Im visitng Mom.My mom likes her and wont entertain another MD, I wanted another opinion. My mother is from Ireland where you question nothing! We are awating muscle +nerve biopsy results,should be in today.I will find out all mecications she is on as well. The staff has been getting her out of bed for 5-6 hours a day since the blood clots are stable[??] I would be interested in other neuros just to contact. Mom is located in Summit/Overlook hospital and lives in Mountainside NJ. Thanks for feedback, Ann
April 4, 2007 at 11:03 am
Contact someone at the forum. There is this lady named Irene that I think is a liason. I have spoken to her and she was very helpful,I believe she is from
New York and reccommends a Doctor Latov. My ten year old son has cidp, the unpredictability of this curse as you called it is the hardest part. You do get better, but it is SLOW! Good luck to your family. Dawn
April 4, 2007 at 11:07 am
I meant to say contact the foundation, not the forum. Sorry, Dawn
AnonymousApril 4, 2007 at 11:29 am
Here is the information for Dr. Latov:
[IMG]http://images.med.cornell.edu/body/common/phone.gif[/IMG][SIZE=1] (212) 888-8516 [IMG]http://images.med.cornell.edu/body/common/fax.gif[/IMG] (212) 888-9206[/SIZE]
Norman Latov, M.D., Ph.D. is Professor of Neurology and Neuroscience, and Director of the Peripheral Neuropathy Clinical and Research Center at the Weill Medical College of Cornell University. He is a graduate of Columbia College, received the M.D., Ph.D. degree from the University of Pennsylvania School of Medicine, served as Medical Intern at Boston City Hospital, and completed a residency in Neurology at Columbia Presbyterian Medical Center, where he also served as Chief Resident. Following a research fellowship in Immunology, he joined the faculty of Columbia University, where he served as Professor of Neurology until 2001 when he came to Cornell University. His clinical and laboratory research interests are in Peripheral Neuropathy and Neuroimmunology, focusing on the mechanisms and treatment of inflammatory neuropathies. His laboratory is credited with discovering that certain antibodies can cause peripheral neuropathy, and for developing diagnostic tests that are currently used to evaluate and manage patients with neuropathy. He lectures widely, and has over 200 publications, including research articles, reviews, editorials, chapters and books.
[B]cornellphysicians.com/normanlatov[/B] (cut and paste into a browser)
Hope that helps.
AnonymousApril 4, 2007 at 10:44 pm
NJ Dr. Tahmoush, he is good. He has an office in St. Francis Hospital in Trenton. Dr Tahmoush’s main office is in Philly.
his Trenton,NJ phone # 609-599-5792
190 Jack Martin Blvd. Building B-3 Brick, New Jersey 08724 732-785-1500
He also has an office in Neptune. He’s a great Neuro and I highly recommend him.
He goes to Brick Hospital and Jersey Shore Medical Center.
They must stress Dr. Barcas or they’ll be given to the other Drs and they aren’t any good.
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousApril 5, 2007 at 2:54 pm
My Mom was diagnosed with Axonal GBS 2/18/07. Never even heard of this before. She had Ivig, could not move from her neck down, totally paralyzed. She is getting better every single day. She has movement in her arms, her legs, and is starting to do so well on the vent that they are considering removing her completely from it next week. This will be only 2 months after onset! Our intial doctors told us she wouldn’t make it and even suggested that we remove her from life suport in her early weeks. We didn’t give up on her, and she didn’t give up on herself, and here she is!!
Please don’t let her give up!! It’s not hopeless, even when it seems it is. Even when you think, it can’t get any worse, and it does, don’t give up!
I wish all the luck in the world and I’ll be thinking of your mom. It takes time, but she’ll get there.
AnonymousMay 30, 2007 at 3:53 pm
In December of 2005, I came down with flu-like symptoms so I thought I had the flu, I stayed in the bed for two days and finally when I couldn’t hardly walk, I decided to go to the doctor. The first doctor I saw said I was just dehydrated, and gave me fluids. I stayed in the hospital a couple of days and was sent home. The day I was sent home, the symptoms got worse and I began to lose feelings in my legs to which I would fall all of a sudden. My sister, who is a nurse thought it was something else so the day I came home from the hospital, she came and brought me to a different hospital. After a couple of hours there, it was finally decided that I had came down with a rare, but serious disease, guillian barre and after a couple of tests, the doctors were right. So then I was given a Plasma exchange, after the Plasma exchange i was in rehab for 4 weeks. Came home and could walk with a walker, and after 6 months I was walking with a cane.It is now 15 months into my recovery My ankles and hands are still weak, unable to balance myself for long peroids of time.I am able to cook, clean,drive,and swim. My neuroligist said I had the axonal form of GBS also known as AMAN which is acute motor axonal neurothapy. My wife and kids have been encouraging, which help me learn to deal with my disability. I`m not the same as I was before, but each day is a blessing,and I thank God for each and every day.
January 13, 2017 at 6:41 pm
I have Axonal damage. Do the hands come back? I can walk without assistance after one and a half years but my fingers are taking a lot longer.
January 14, 2017 at 4:01 pm
Ron, axonal damage takes years to heal and recovery may not be 100%. I have permanent axonal damage in my lower legs after about six years out of hospital.
It is impossible to generalize about recovery from peripheral neuropathy. Every case is individual. You may have permanent disability in your hands, but it is much too early to conclude that your hands will not improve. You should exercise your hands regularly and hope for the best. A good tool to use is Thera-putty. Do you have a physical or occupational therapist? They should have given you this, but it can be bought online. It comes in various stiffness.
January 16, 2017 at 8:11 am
Thanks for your response. I would like to talk with you more about axonal GBS. I feel like talking about it helps me keep working on my recovery.
January 18, 2017 at 3:13 pm
Ron, I don’t know anything special about diagnosed axonal GBS. I am diagnosed CIDP, but ordinary CIDP and GBS can cause axonal damage as well as the demyelination. The objective is to try to minimize it by early treatment.
For your hands, you need to get some Theraputty, which is available online. I recommend 4 oz of the green. I had a link but my copy/paste isn’t working. It’s easy to find. You just work it with one hand, exercising each finger. Something you can do to make it more interesting is to embed a few pennies in the putty, then extract them using one hand only.
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