new member story
AnonymousAugust 31, 2007 at 12:35 pm
Hello everyone. I’d like your opinions on my husband’s situation. He was diagnosed with GBS in early April. It started with facial paralysis, then muscle weakness in all extremities. He received some IVIG treatment and felt better. In late June he tried going back to work as an electrical lineman for 2 days after which he could barely walk at all. Since then he’s had a lot of trouble standing up, climbing stairs, walking and balance. The first neurologist never did anything more than observations and test reflexes in the office but did give the IVIG treatment, every other day for 3 treatments in one week, then one treatment a week later. After the attempt to return to work, my husband had a couple more IVIG at my insistence but the doc generally ignored us. In July we finally changed doctors and went to the University Medical Center. The neurologist there did all kinds of tests – all of which came back normal. He says it could have been GBS but there’s no way to prove it and at this point there is nothing more to do…no treatment…no further testing. He says that in 6-8 months GBS patients are healed as much as they are going to heal and that my husband may never get any better. My husband seems to be taking the news fairly well, much to my surprise. I however, am not. Any suggestions? Has anyone tried the herbal concoctions I’ve seen on the internet with any success?
wife of BK
August 31, 2007 at 1:47 pm
First of all welcome!
Second…I am a year post onset and I am still getting better. At 6 months I was still recovering but was extremely better than 4 months. At 8 months I was even better.
Sounds like the IVig helped halt the progression of GBS if it was indeed GBS. Your hubby needs lots of rest. Going back to work so soon is admirable but to recover properly he needs to take some time off and just take it easy. I am sure others with more experience can post more info expecially since it started in his face. I just wanted to make sure you guys dont listen to the dr about when he will get better and how much he will recover if it is/was GBS.
As for herbal stuff and supplements, I think all of us take our own variety of these. There is no proof that any one or combination of things help with recovery, but within reason it cant hurt. I take lots of vitamin C, omega 3 & 6, coQ10, b complex, Ambrotose (I stated in one of my posts that this is controversial as to if it helps anything or not but I have found that it has helped me. Energy wise, and otherwise.), I drink lots of fluids but could probably stand to drink more. Vitamin water is my addiction, as is anything natural. I dont drink coffee or soda anymore since i got sick and I try to eat healthy…need to get serious about that again. And I rest as much as I can, I learned the hard way that this is essential.
AnonymousAugust 31, 2007 at 2:59 pm
Welcome to the Forums!
Do not waste your money on ANY herbal concoctions on the internet. This is something that the British GBS forum warns against in big RED LETTERS on their forum pages. These are most likely than not [B]fraudulent[/B] web sites that dont know A THING about GBS or related neurological diseases. The only suppliments that should be taking are ones that are ok’ed by doctors. Please please please dont do it – in fact I have heard many times before that there are some things that could harm GBS patients with regards to herbal remedies (Im not taling about vitimens here)
Secondly, DO NOT listen to your doctor when he says that your husband is the best that he will get, that is simply not true. GBS takes years and often, even more years, to recover from. Our pesky nerves, and the sheath around them take ages to heal (and I mean ages). This is not like the common cold. Your husband should really have PT to help him along some, has he had any yet, or is he having any done? At the moment, I believe your husband IS VERY MUCH still in the recovery stage ….. its only been just over 4 months, im not sure what the doctor expects from him, this is why PT is needed to help him physically. However, a very important thing is for him to listen to his body, and to rest and sleep when he needs it. He must not overdo things physically, or push himself beyond his limit, as he will only set himself back.
I will post an ariticle for you regarding the differences between GBS / SIDP and CIDP. These are all part of the same “family” in a way, the reason for doing this is because of what COULD have been the continuation of the ‘attack’, however, it could have been the fact that he wasnt even nearly recovered to do anything, yet alone going back to work.
Please visit us often for help, questions or some input 🙂
AnonymousAugust 31, 2007 at 3:11 pm
[FONT=Arial][SIZE=2]Here is the article i was speaking about. I may be confusing you by adding this, however, just an reason as to why he may have gone ‘down’ so badly again after his initial IVIG could be SIDP, which takes between 4 – 8 weeks to get to its worst point. GBS takes up to 4 weeks to get to its worst point. However …. as I said, it sounds VERY possible that your hubby should not have returned to work and therefore had a bad setback (which is a big possibility). [/SIZE][/FONT]
[B][FONT=Arial][SIZE=5]What’s In a Name? Important Differences[/SIZE][/FONT][/B][FONT=Arial][SIZE=5]
[B]Between GBS, CIDP and Related Disorders[/B][/SIZE][/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 ([COLOR=black]SIDP[/COLOR]). [COLOR=black]SIDP[/COLOR] 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, [COLOR=black]SIDP[/COLOR] 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 [COLOR=black]SIDP[/COLOR]. Treatment is usually as for GBS: a single course of IVIg or PE. This will be sufficient for many of these patients. However, some [COLOR=black]SIDP[/COLOR] 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 [COLOR=black]SIDP[/COLOR] 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 [COLOR=black]SIDP[/COLOR] 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, [COLOR=black]SIDP[/COLOR] 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]
AnonymousAugust 31, 2007 at 8:37 pm
Welcome to the family I am new here myself having just got GBS in July… I have met some very wonderful and supportive people (GBS family) here. The one thing I can offer is I would find a new Neuro because if they are truly knowledgeable about GBS and caring for their patients they do not say that is the best I can offer. Mine has never told me that and if they ever do I am going to a new dr because that to me is defeatist and that is one thing that I did not accept before GBS and definitely not now… One thing I can tell you is that having my wife at my side telling me we will get through this helped me… I will recommend that with the facial paralysis for your husband to use straws if he is not already that has helped me greatly. My face was the most affected by GBS (Total paralysis) no smiles or anything else for that matter… Tell your husband to keep the positive outlook… Take care
AnonymousAugust 31, 2007 at 8:38 pm
Hi there and welcome! I read your story with interest because I was also diagnosed in April. Actually I got sick in late March/April, but didn’t have a diagnosis until May. And I didn’t receive IVIG because he said it was too late. Sooooo, I wanted to see where your husband was compared to me. I have gone to three months of PT and still have problems walking, weakness, balance issues and an ataxia. The ataxia makes you look like you can’t pass a DUI test to put it bluntly!! I was just talking today to my son about where I was and where I am because I forget that I have made any progress it is so slow. BUT I have. I have more energy even so I am still tired, my walking is a little faster than it was, and my arm strength is better than it was. I am king of getting to a point where I am not self concious to go in public and am working. But my work has been very good about a light schedule. I don’t think I could complete an 8 hour shift though. I have read as many posts as I can here for support and encouragement. Today is a “I’m in a funk day” and I don’t know why. I have really been in great spirits but sometimes think it will never go away. And when I think that, I remember that it has improved, just very slowly. My advice is to read some of the posts here just to see how everyone is different. There is a wealth of information and answers to questions that you may have. Gabrielle
AnonymousSeptember 1, 2007 at 1:09 am
Mrs. BK Welcome and thank you for being an advocate for your husband. We don’t give enough credit to our caregivers here. I would like to let you know how important you are to us! If you eat healthy you should not need supplements and surely don’t need to purchase herbal concoctions. I just read about one last night that was the cure for GBS. I could not believe all the mistakes in the site. It looked professional but the claims were just so far fetched. The information was so poor that I wanted to rip the site off the internet for so much misinformation. I agree with the others the nerves need plenty of time to heal. Only REST (horizontal perferrablly) will help the damage to the mylyin sheath. The muscles need exercise to build strenght. You have to listen to your body on the activity level. Do too much and that will set you back a few days. It does take a long time for the residuals to fade away. Since the GBS started in his face he might have Miller Fisher Variant which effects the eyes? You did not mention those. I had the IVIG and it did not work so that is why they gave me the Plasma Phresis. You did not mention if he suffers from pain. I wish I had a dollar for each time we had a Doctor repeat something they read from the internet that is wrong. You will pick up a lot of information from these forums and see that everyone had a different rate of recovery and also different effects from the onset of GBS. I still have tingling in my hand and feet and trouble with my eyes. Those were the first places effected 22 months ago. I still have no stamina but am better than I was when I first come home from the hospital. I was there of only 9 weeks. I could walk twice the lenght of my house and steps before they would let me come home. I had Occupational Therapy (OT) and Physical Therapy (PT) at home till I could get to the facility to work on getting better and better. I still enjoy the PT in the rehab pool. I need to get more stamina to walk a longer distance. Large grocery stores and I don’t get along unless they have an electric cart for me to drive. I have to conserve energy even at this time. I still need more strenght in my legs and hips and abs. The upperbody strenght come back slowly. I am still making progress. Guillian Barre Syndrome or GBS also stands for [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly and we are! Lean on us as your extended family! We have been there already! Keep a Journal because BK is just in the early stages of healing and things will change. Don’t believe the Doctors they don’t read this site! Keep up the great work and use humor and be possitive it does wonders!
AnonymousSeptember 1, 2007 at 1:26 am
Dear Wife of BK:
Welcome to the forum. Being a lineman is a pretty taxing job for people in good condition. Being out in hot weather is hard on anyone. With GBS, the residual effects are multiplied by lack of quality rest, dehydration, and physical exertion. With GBS the nerves in your body become extremely inefficient. They leak energy until re-myelination happens, if it ever does, which could take a year or longer.
Your husband also needs to rebuild muscle strength, which was lost due to atrophy, not working out, and a loss of nerves activating the muscles. Your husband may want to consider working half a day, three days a week for a month or so, until he recovers to a point where he can increase his strength. I’m hoping that a frank and honest discussion with your husband’s employer will allow some flexibility in scheduling. It may be cheaper for the employer to be flexible, as opposed to having to go through the expense of training a new man.
It isn’t very suprising that your husband is accepting his situation pretty well. I did a study on this phenomena while in psychology school and it is actually pretty common. I would be glad to share some insights with you about this if you e-mail me.
AnonymousSeptember 1, 2007 at 2:50 pm
Welcome Wife of BK ~ you’ve gotten some great advice. I hope that soon your husband will join us here.
Gabrielle ~ a “funk” (it will come and go) is OK and very normal for what you are experiencing. Do a “search” on grieving and you’ll find that it’s an important part of the healing/acceptance process. After the kind of experience GBS/CIDP throws our way we can [I]never[/I] go back to “the way we were”. We have to find our “new norm” in all areas of our life. And that is one of the reasons your GBS family is here for ~ to support each other as we navigate these “strange waters”. Here’s a hug for you on this funky day 🙂
AnonymousSeptember 1, 2007 at 4:18 pm
Hi Wife, Welcome to The Family. Nothing but Good Nutrition and lots of rest is good for the recovery process. There really is no way to speed up recovery. GBS stands for Getting Better Slowly, no time limits, no speeding up the process, just learning to live life alittle differently. The dr was wrong when he said he will be as recovered as he is going to get in 6 to 8 months—he can still recover in 3 years or more, absolutly no time limits. The recovery process may slow down, but if you were to keep a journal and look back to where he was at this time 2 months later you would see some improvements were made, might be small but none the less improvements. Positive thinking is important also. It sounds like your husband needs alittle more rest, to keep the residuals from acting up. If he keeps relapsing, without getting back to his new normal, he could have cidp. Ivig is used to stop the damage that is done to the nerves, if he has gbs and not cidp, it wouldn’t do its job this long after the initial attack. It is used more often in cidp, with good results. Rest is the best medicine. Slowing down or cutting back on his work hours is essential for a full recovery, sooner. If he can work half days it would help, as long as he can get rest time in. Take care.
AnonymousSeptember 11, 2007 at 4:23 pm
Hi there and thanks for the “get rid of your funk” message. I swear this site is so helpful to me, I can’t even tell you! It even helps reading some of my old posts because I realize what a boob I was and look at me now! 99% of the time I am just fine and dealing with things, but like you said, it is a grieving process too for what I can’t do YET! And, I understand some things might not return I guess. But thanks to everyone. I even had a private message about my “funk”. This is month six since onset, and month 4 of PT. They have been wonderful and have kept my sense of humor over the top! Gabrielle
AnonymousSeptember 27, 2007 at 9:06 pm
I wanted to comment on that article and urge everyone to read it. It explains the differences between the syndromes well. Too often on this site, we use the generic term GBS, which I believe does a disservice to many of our readers. There are 3 different syndromes discussed and it will be very beneficial for readers to know exactly what the person posting is speaking about. I myself had GBS and I was always confused regarding what
I was reading at this site versus what my neurologist was telling me. After reading that article those differences were reconciled.
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