A worried hubby
AnonymousNovember 14, 2006 at 7:50 pm
Hi all and thanks for being here.
Im from Iceland so english is not my first language so bare with me if my post is a bit hard to understand. I have been reading about this gbs here on the forum as today we were told my wife has the GBS syndrome something we had never heard off before today.
She(age 45) began feeling numb in her feets and felt hurt in them last Friday and then on Saturday her hands began to act the same way… and yesterday(Monday) she was’nt able to walk unless helped so I drove here to the ER where many docs did all kinds of tests ,blood, blood pressure, hammering her nees to check the nerve responce(where none) x-ray, and more… she was then put on a room wheere her inhaling is messured 24/7 and they take blood pressure often… and then she was put into some machine similar to cat scan..(dont know the english words for those tools). They were thinking of putting a needle into her spine for testing some liquid but didn’t do it today anyway.
I talked the her doctor and he said there were 4 common treatments available(some blood cleaning process and other options like some proteines) but as they all had their rather bad side affects he wanted first to try to let here body ‘fix itself’ and now when I´m reading the forum most people mention some meds that are critical to be put on as soon as possible so I must say I’m a bit worried… The Doc also told us this syndrome would go away in few weeks time and she would be back to normal. But when reading this forum I realize it’s not always so to say the least… or atleast not with those posting here…
The thing is I can’t find anything here in Iceland about this GBS other than a little description on what it stands for on a website from the health department so I cant find any GBS’s, to talk to, over here.
Well anyway… I just wanted to share this and say thanks for this forum.
Greetings from Iceland, Nenni
AnonymousNovember 14, 2006 at 8:03 pm
We are glad that you found us. Your English was very good for it not being your native language. The treatments you mention are Plasmapheresis and IVIG. When I was in her situation the last thing they wanted to do was let it go and burn out on it’s own. If allowed to continue there is no telling when the attack on her nerves will subside nor how much damage will be done. They really need to start her on IVIG infusions or Plasmapheresis now, not later. The IVIG is the less invasive of the two because it only involves an infusion, where plasmapheresis is essentially blood cleansing.
If it were my wife having been through what I have, I would first push for them to try the IVIG, usually the first course is over several days and is a larger dose then what she would normally get based on weight. After that initial dosage, maintenance doses are given if she shows improvement every 2 weeks or even monthly. The goal is to stop the attack on her nerves to allow her to recover strength and ability.
I hope that helps, we are here to help however we can, we have been there. If I can do anything else feel free to email me jerimyschilz at hotmail.com . Take care, you and your wife and in my prayers.
PS-I wanted to add that IVIG is usually considered a very safe first treatment to try, I am not sure why they are hesitant unless it’s a cost issue.
AnonymousNovember 14, 2006 at 8:26 pm
Hi Jerimy and thanks for your quick reply.
I will try to get a hold of here Doc tomorrow and ask him further about this… I had no clue what to ask today when we got the news as I had no idea what this GBS was… Now atleast I have some ground to build on … One thing I noticed was he said “We think this is GBS” so maybe they hesitate to ackt before being totally sure… I don’t know… In a way I was pleased when we got the news as I was beginning to think it was MS so…
Anyway I try to get more detailed info tomorow and I will be back on this forum tomorrow night when back from Reykjavik(where she is hospitalized 50km. away) to read some more and to get the support I feel by reading all of your posts and storie… not to mention being able to discuss this with here doctor as Im pretty sure we only got a small part of the story when he talked to us today…
Thanks mate and take care
AnonymousNovember 14, 2006 at 9:44 pm
hi nenni, welcome to the family. insist on treatment now and not later. print out some of the information from here and show it to her drs. i wasn’t treated the first time and now it has been over 1 year since the first gbs paralysis event, i have had 4 hospitalizations and 3 at home paralysis events, was treated one time but had a bad reaction to it, only because i am very sensitive to medications. please give your wife my best and make sure you take good care of yourself also. you are your wife’s voice now, don’t let the drs tell you we will just wait and let her body repair itself-alot of times that can lead to many years of problems. take care and ask as many questions as you have, we know what she is going through we have been there. 🙂
AnonymousNovember 14, 2006 at 10:46 pm
Definitely get the doctors to do the spinal tap as soon as possible! This will show if her protein levels are elevated,(that could give you an answer as to if it is GBS) however, sometimes the result can show negative even though its positive (its called a false negative).
Jerimy and Angel (Cheryl) are right about the IVig or the Plasmapharesis. This is a procedure that cannot be held off! This needs to be given to her WHILE the her body is being attacked. If it is GBS, then the attack could last up to 4 weeks, and its [B]during [/B]this time (and not after) that the treatment needs to be given – so the sooner the better. Cheryl also said you need to be your wifes voice, I know this can be difficult, but keep asking questions, Insist on things and be persistant. Please keep us updated.
AnonymousNovember 14, 2006 at 11:01 pm
hi nenni & welcome,
ditto those before me. additionally the spinal tap can give false negatives. it is important to have the emc/ncv test done. then there can be no doubt it is gbs or not. what your doc has told you is from textbooks that are not up to the latest information. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousNovember 15, 2006 at 9:16 am
Welcome Nenni! We are all here for you! The IVIG or PP will not cure the GBS but it will stop the process and get the immune system to start to reverse the attack. By the time you are seeing effects the damage is done. And more is still being done that need to stop. It does take a long time for the body to heal the damage. I had the IVIG and my body did not respond so I was transferred to another hospital that could give me the PP treatments. That was over 3 weeks before I started to feel a tiny bit better. This is rare and frustrating how little is known. It is very scarey for the patient and the caregivers. GBS does mean [B]G [/B]etting [B]B [/B]etter [B]S [/B]lowly!
AnonymousNovember 15, 2006 at 12:20 pm
Sorry to hear about your wife’s trouble. I agree with all of the previous posts in answer to your questions.
Also, since the doctors treating your wife don’t seem to have the latest and most complete information about GBS, you can go to the home page on this website and request the information handbooks for Patient and for Doctors.
This will give you and your wife a lot of information you can give to her doctors.
Time is of the essence now. Getting her treated with IViG quickly can mean the difference between a severe attack and a milder one, and between bad residual problems during recovery and residuals that are not as bad.
Best wishes to you and your wife. Please let us know how she’s doing.
AnonymousNovember 16, 2006 at 12:04 am
Hi and thanks for all your kind replies.
I did contact her doctor first thing this morning and he did take that spinal fluid and started this AVIG injection today…. He told us she would get some 3 bottles of this and we might bepare for it would probably need to be done 2 or 3 times?
She also was given some nerve test this morning so atleast something is being done. She felt very tired tonight and got some irritating tickles allover.. and her backpain was worse but the numbness was similiar to yesterday… her breating is still ok and yes… she was talking about some strange kind of headache… talked about it as it was kinda outside here head…
I am more relaxed today as her symptoms did not got as much worse as yesterday and it did also help to read all your replies and wishes… I felt kinda alone before finding you guys so again thank you all for being there…
I will let you know how things progress and hopefully this avig workes well.
Anyway its 5 am over here so best regards until next time.
AnonymousNovember 16, 2006 at 9:03 pm
Hi all.. was coming from visitin my wife and she is much better now… getting pain killers every 4 hours and the ivig is on 60 now and no problems …they had to low it down to 20(the drop counter) yesterday because she wasnt feeling so god..
The numbness in feets and hands is the same but haven’t got any worce and her backpain is almost gone.. so we are quite happy today and pretty optimistic(nock on wood)… Well im so tired after slelpless nights for the last couple of days so im going to bed now and hopefully sleep well because I have to drive 60 miles to visit her and its pretty difficult to stay awake on the way home every night but when home I havn’t been able to sleep so it’s kinda catch 22..
Anyway… good night all and good luck
AnonymousNovember 17, 2006 at 11:59 am
I think that often the greatest source of comfort to a patient, and possibly the family, is knowing that there are people who have gone through the same thing. Also that, even though at times it doesnt seem like it, there is light at the end of the tunnel and that things will get better, really they will!
Yes, the IVig needs to be done a number of times for maximum effectiveness. I think one thing you need to know, if you dont already, is that you will probably not notice any difference immediately. The reason for doing the IVig is to try and stop further damage, not to reverse or ‘cure’ GBS. So please do not be discouraged, because if the IVig is able to stop further damage, your wife will take a while to start to heal, and this may not be quick, overnight recovery. I think you need to know this, if you havent been told yet, so that both of you are not discouraged when you dont see results immediately.
We are all thinking of you both. Please keep on talking to her about what we have said, and always let her know what is going on with and to her as the worst thing for a patient is not knowing what the doctors are doing.
AnonymousNovember 18, 2006 at 12:08 am
I was about your wife’s age when GBS hit me. Her case sounds similar to mine. Yes the IVIG treatments are given to stop the progression of GBS. My treatment didn’t work and I was also given plasma exchange. I was totally paralyzed but not vented. I spent over 3 months in hospitals. It can get worse before it gets better. I’ll pray for you. The good news is there is hope. I’m not 100% better two years later but I can do many things. I just need to rest alot and my feet still tingle all the time.
AnonymousNovember 20, 2006 at 3:25 am
Hi all.. My wife is still on this ivig treatment and her her condition hasn’t changed for two days now. She feels better one day and is worse the other… and they have been playing with the speed on the drop counter as it has something to do with that. Her breathing is still strong but they monitor it well and let here take breating tests every hour during the day and a couple of times during the night along with monitoring here co2.
The docs are talking about changing this ivig tratment soon to a every other day injection I meen injection for a day and then day off? Is that similar with what you guys had?
Anyway… Just wanted you let you know…
‘Talk soon’ Nenni
AnonymousNovember 20, 2006 at 8:10 am
I was reading about your wife and remembering when GBS hit me. Her case sounds similar to mine. Yes the IVIG treatments are given to stop the progression of GBS. My five daily treatments didn’t work and I was also given plasma exchange for five treatments. One every other day. I was totally paralyzed but and vented. I spent 9 weeks in hospitals. It can get worse before it gets better. I’ll pray for you, the caregiver. The good news is there is hope. I’m not 100% better one year later but I can do many things like drive and grocery shop and work on my family photo album/scrapbook. I just need to rest alot and my hands & feet still tingle all the time. Some days they hurt more than others. I can tell you that if I have a bad day it is usually because I have done too much the day before. The more I rest and actually get some sleep I do feel better. I can also tell you that you don’t get enough rest in the hospital.
Now about you. I am worried about you and all the traveling you are having to do. Is others able to visit your wife also? How about taking a night a week off from going to the hospital for you? You can get bills paid or grocery stop and just take time to catch up on phone calls or getting off your feet. Once she comes home you will have your hands full and need more energy. We can not have one of our caregivers getting ill. You have to pace yourself also! Also by doing this you go back in two days you will see more progress. Just a thought. Don’t be ashamed to ask family and friends for help. I told my husband to take Wednesday nights off and ask my friends to come in that night to visit. I also arranged to have a friend come in twice a week for the afternoon to be with me. She read a book to me, wrote Thank You notes, read my Christmas and Get Well cards. She combed my hair and made sure I got my hair washed and my nails cut and girl things done! It was time I had to look forward to those visitors and also knowing my husband had time to himself also took away some of the stress. Just a thought for one of our caregivers! Take care of yourself! 😀
AnonymousNovember 27, 2006 at 6:47 pm
Hi all.. A little update.
She will go to a special clinic tomorrow where there is more therapy than they are able to give here at the hospital.. Her hands are a little stronger but she isn’t able to stand up or nothing but she now can help the nerses with here hands when they are putting her in the wheel chair and similar so atleast its getting a bit better although the process is very slow.
Im sleeeping better and not as down and worried as I was in the beginning and I have an eleven year old wich I have to stay strong for, not letting him feel im worried and such but it’s getting better by each day. Its kinda One Day At The Time process but thats ok.
Just wanted to share this…
Best regards, Nenni
AnonymousDecember 7, 2006 at 12:29 pm
Hi all… Bad news. My vife was rushed again to the hospital two days ago after she had got double vision and som blur vision and lost more power in her hands and feet. She is now on another 5 day globulin treatment and is almost completely paralized but here breathing is still ok thank god… Yesterday she started to not being able to be in a light so something is till progressing… and she was hopitalized 13th of November,,, so its almost a month,
We are both a little low after this and although we hope this will get better its just so damn hard to watch her there… Her back is kiling her as she has very damaged back and now she cant find the right setting for her as she is mobalized so…
Well anyway… just had to blow out a bit…
Thanks for being there…
AnonymousDecember 7, 2006 at 2:14 pm
Setbacks aren’t unusual with this, I think they may have tried to move her to quickly. Hopefully after another course of IVIG she will begin to see the improvement again. I know it’s very frustrating. You all are in my thoughts and prayers, take care.
AnonymousDecember 29, 2006 at 7:22 pm
Hi all and a late Merry Christmas. My wife is still in the hospital and they took a nerve test on her yesterday and it was worce than the one taken on the 15th of november. She is getting more dumb feeling in her nose and is having difficulties when trying to hold a cup or a fork… I got her home(by an ambulance) on Christmas eve and we had a great time although it was pretty hard as she isnt able to help when we have to carry her… but it all went pretty well… we had to remove the bedroom door and alll the family staid in our bedroom while opening tha packages..
We are planning on a family meeting with her doctor in early January and then hopefully some better news.
Thanks for being there…
AnonymousDecember 30, 2006 at 7:19 pm
So glad your wife was able to be at home and take part in some Christmas Cheer! However, I am sorry that things dont seem to be improving like you would hope because this is so stressful to everyone involved.
From what you are saying, it seems that your wife is growing weaker now and more ‘things’ are becoming numb. The progression of GBS is supposed to stop after 4 weeks, and it has been longer than that for your wife it seems. I am attaching an article that was printed in the Communicator which discussed GBS, SIDP and CIDP. The reason I am posting the article, and I apologise if you have seen it on the forum before, is that I was wondering if SIDP may somehow be a diagnosis. Having said that, if the disease is still in the progression stage, IVIG or possibly Plasmapharesis could be still given.
[B][FONT=Arial][SIZE=5]What’s In a Name? Important Differences
Between GBS, CIDP and Related Disorders[/SIZE][/FONT][/B]
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]
Article from the Summer 2006 GBS Newsletter[/B][/SIZE]
AnonymousDecember 30, 2006 at 8:46 pm
Congratulations on spending christmas as a family. That is wonderful that you were able to work things out. It is so important to have a good support system around us during this time and it sounds like she has it. Tell her good luck and keep up the good work.
AnonymousDecember 30, 2006 at 9:23 pm
Thank you so much for your replies and good wishes and @ali no I had not seen this article ….preciated….I have printed it out and im going to have it with me when meeting her doctor in a week when we have a family meeting to go over things… mainly to explain for the kids what to exspect and keep them informed about what steps will be taken.
Her doc is keen on having her at the hospital until he see’s some improvements and then sending her to a clinic..and I second that… I wasn’t too happy when they sent her just 2 days after her first IVIG treatment but did not argue as I wasn’t sure… But now I just tell them what I feel and I have read more just to be able to argue/fighing on her behalf:-)
Anyway… I will go with my 11yo to Reykjavik tomorrow to stay with her tomorrow night and we will make the most of the great fireworks as us Icelanders are pretty crasy to say the least when it comes to celebrate new years eve.
Not being able to visit her every day is the hardest thing and I’m always feeling guilty although I know I maybe shouldn’t.. I have to work and keep the home too.. so it’s kinda bit of everything those days…
well happy new year my friends and thanks for everything… I know I’m not posting everyday but this forum just saved me, as afraid and worried I was in the beginning and its’ still saving me:)
AnonymousDecember 30, 2006 at 10:50 pm
My thoughts and prayers are with you and your wife. I hope she feels much better very soon.
Her experience is similar to mine in that I was given IVIG in a 5 day course, started feeling better, and was discharged from the hospital. About 1 1/2 – 2 weeks later, I started getting worse again, and was told repeatedly by my doctor and family that I was just having bad days. Finally my neurologist agreed that I was indeed getting worse and gave me another round of IVIG, which worked like a charm – my improvement after the second course was exponential. I am hoping that this last round of treatment has resolved the problem and that she will start getting better!
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