Hi there i"m new to the forum
AnonymousMarch 31, 2009 at 11:07 am
[B][/B]My name is Amy and I am the wife of a GBS victim. I want to first tell everyone here thank you very much because since my husband was dx a year ago I have searched and read more info here then we could have gotten anywhere. So thank you all very much! At the end of February 2008 my husband began having numb fingers & toes. then it spread up the arms and legs and he thought he pinched a nerve. I took him to a Chiropractor who looked at him and said you need to be in an emergency room. You have a neuropathy, and I’m not an expert. I later thanked that Doctor for not trying to fix him. Anyways, after 2 days of MRI’s Spinal taps, blood tests etc it was dx GBS and IVIG was started. He had 5 days of IVIG and considers himself very lucky. He came home walking with a cane. It never got to his lungs. This year has went on and slowly he has gotten better. Not 100% but definetly better. Then after 2 weeks of high stress at work on March 13, 2009 he began to feel numb in places he had gotten better in. Called the neurologist (several times) and now have an appt April 1, 2009. This has progressed almost to the degree he was the first time. I’m wondering if this could be just residuals from stress or could it be that this could be CIDP instead. Just wondered if you guys had some thoughts for us. When we go to the neurologist I have a ton of questions, but you guys are all the real experts. Since this last episode my husband has started some extra vitamins such as b12, bcomplex, fish oil, etc. We think that has helped some. Sorry this is so long, I just wanted to give enough info for some advice.
March 31, 2009 at 4:28 pm
I want to start out by stating I am just a mom and this was our experience. Everyone is different. Here is how we were able to decipher between gbs/cidp. first diag. fit the criteria of gbs, symptoms came on in about a 4-5 week time frame (was borderline regarding possible cidp) Kevin was unable to walk, hold things, lungs, bowels, bladder. IVIG took care of the obvious things in 24 hours and with time the rest followed. About 5 months later, a relapse, docs assumed more ivig was just needed as the repeat ncv/emg had not gotten any worse than the first. Again 5-6 months another relapse, this time there was a difference in a third ncv/emg so we solidified the cidp diagnosis. In my mom opinion, there would be two sure fire ways to reconsider the dx. Since there are “worsening” symptoms, and almost to the degree of the original attack, you could ask for another l/p. If there was another attack the protein would be there again. If he did have an initial ncv/emg, you could bring the old report with (in case they don’t have it) and compare to see if there is worsenning. I think if it were residuals, it would get a little better with rest, not continue to decline. That was the dilema we dealt with, it was very frustrating, residuals? CIDP? I may be a biased contributer since we did in fact “graduate” to cidp, but in retrospect, I am mad that I wasted as much time as I did thinking it was residuals. We could have gotten ivig sooner and perhaps not acquired the permanent pain Kevie seems to have now. The way I see it, if you have insurance, whats the big deal to get a few tests done to rule things out? Better to err on the side of caution. Please remember, that is just my opinion, others with gbs may be able to give you better advice as to the duration of their flares and the level that they reach based on their experience. Good luck! Let us know how it goes.
Dawn Kevies mom
AnonymousMarch 31, 2009 at 6:23 pm
Welcome to our family. It is always a good idea to have the doctor check things out when new stuff happens. If it is truly GBS then it is probably just residuals but of course there is such a thing that he could actually have CIDP or even another type of problem. Regardless the doctor is usually the key. I know when I am under stress I have a lot of flare ups that are really aggravating. But whatever it is tell him to take care and remember to rest.
Glad you made it on here.
AnonymousMarch 31, 2009 at 8:01 pm
[B[/B]Thank you all. We go tomorrow and we’ve only seen this doctor once other than the hospital stay. I hope he is not defensive when I ask a lot of questions, but we have to get to the bottom of this. My husband is very upbeat but as you all know this is a very frustrating syndrome, and patience only last so long. again thanks.
AnonymousApril 2, 2009 at 10:21 am
Well we seen the doctor and he is ordering IVIG 45g/1kg for 3 days and if not better 90g/1kg for 3 more days. They are going to call the hospital closes to us. He did not think they did ivig on Saturdays so will probably not be able to start until Monday because he wants them together. Doc said it was very possibly CIDP but no lp for now because he’d treat the same way anyway. I have my fingers crossed that ivig helps. Could you guys give me some idea of how long it should take to see (feel) results? The only other time he had ivig was in the hospital and the doc wants to know if it’s helping as he gets each one.
April 2, 2009 at 12:23 pm
Sounds very similar to me. I was first diag. with GBS, treated with 5 days of IVIG and recovered to 100%. I was jogging again and doing better than ever just 4 weeks after treatment. Then one day my feet started getting numb, then the next I had the same issues as before. That was a year ago….
When I saw two specialists last year they diagnosed me with CIDP. One said I had this “all along” and it just presented itself like GBS, but since I responded so well to IVIG they had treated me correctly no matter if it was GBS or CIDP.
CIDP is “Chronic” so treatment will be on a regular basis, hopefully stretched out with help of Prednisone. My Dr. says eventually I “MAY” be able to go longer between treatments, but right now I max out at 38 days. I head to the hospital Monday for my 12th session of IVIG (some 3 days, some 4, mostly 5 days). All since my first treatment 14 months ago.
I have found that I feel worse before I feel better when receiving IVIG. By the end of the treatments I am ok, but I don’t feel at my peak until 2-3 days after last day.
When I was at my worse (no prednisone) I could not start my car (turn the key), or walk up 1 single step without colapsing. I always find that interesting that IVIG weakens me before fixing me.
Best of luck, whereabouts in Michigan ?
April 2, 2009 at 12:56 pm
When starting ivig from scratch they usually do a loading dose. This consists of 2 grams per kilogram of weight. To figure out your husbands amount, you take his weight in pounds, divide that by 2.2. That is his weight in kilograms. To find out what a loading dose is, you multiply that by two. So if he weighd 100lbs, you would divide that by 2.2 which is 45 kilograms. Now you multiply 45 kilograms by 2 (load dose, 2g/kg) which is 91. So he would get 90 grams of medicine as a loading dose. A maintenance dose is 1g/kg. That is his total weight in kilograms. In this case, 45. They usually take the whole amount of the dose and divide it into 4-5 days. Some people can infuse more in one day than others, it all depends. Usually people seem to do 25-50 grams a day. My 12y/o son does 30 grams a day. Check out the NINDS sight, it will give you protocol for ivig administration and cidp. I always say that we are lucky, we have a medicine. It will get better. Eventually, you could look into home health care. Be sure to take advantage of the hospital social worker. She/he will work with your doc to have things set up and ready for you to get infussions at home for next month. Keep very accurate regards regarding progress and symptoms. The treatment plan will be based on your husbands own personal needs. Some people go weekly,bi-weekly, or in my son’s case monthly. others go 3 times a year. It is all trial and error and the first year or two will take patience and dillegence. I have a binder that I keep with all test results, blood work, phone numbers and any info I find on the internet. I keep a question section as well for each of our visits. It really helped in the begining. About the l/p, I think ivig might affect the results, ask the doc. Also, if he has not had a ncv/emg, it might be a good tool to use for comparison should you need to guage improvement/decline in the future. It was a tool we utilized to convince the insurance of a decline when we switched from our gbs to cidp diagnosis. Also, you can sign a paper while in the hospital allowing your doc to recieve your husbands record, then you can get them from the doc and not be charged a medical records fee. Try to have the hospital pharmacy save you the lot numbers of the ivig. I keep them all, in the event there is a recall, you can refer back. As well, if a particular lot makes one ill, you can ask to make sure you get a different lot. Depending on the brand you will eventually use, you can also contact the company to see if they have a frequent user program. Kind of like a little insurance should you loose your insurance and cannot get ivig. Private message me if you like, I know I gave you tons of info today. The best advice I could give you is to tell your husband to trust his instincts and his body and relay things to the doc. research and ask questions. I alsways would bring my research in so the doc could look at things. Good luck and you guys will get through this!!
Dawn Kevies mom
AnonymousApril 6, 2009 at 4:00 pm
Thanks for all the info. They got my husband in on Friday to an outpatient services facility and he had 40g friday, saturday, and sunday. Today he’s really tired. I thought of zbrd saying he feels worse before he feels better and that is my hopes. My husband talked to the neuro’s nurse today and he is to have treatments again wednesday, thursday, and friday of this week at 90g. So I guess now the loading dose? I sure hope this works and starts to make him feel better. We are from Southwestern Michigan close to Indiana. One good thing is this week is spring break so we had both taken off to do something with the kids. Our kids totally understand and it’s more important for dad to get better. We thought maybe Friday night we’d get a hotel room close to home so they can swim, etc. That’s enough for them. Thanks Dawn for advice. My husband was laughing at me this week because I have a notebook with each day how he feels now & I’ve read the gammagard bottles each time. I sure wish I’d kept something like that while he was in the hospital a year ago, but I thought it was a one time thing. I’ll sure do so going forward though.
April 6, 2009 at 10:42 pm
Where at in Michigan. We go to Grand Beach (michigan City/New Buffalo area) I don’t know how old your kids are, but if you are near Mich. City, it is about an hour from us, just a little further are two water parks one in Elmhurst Illinois and one in Schaumburg (I think, if interested I could look it up) If they are loder than 8, I would say skip it. Glad your doc is being pro-active with a loading dose. Hopefully he will do a few more before he moves to maint. doses. Once you get a regular schedule going it will be a little easier.
Dawn kevies mom
AnonymousApril 7, 2009 at 11:00 am
Wow what a small world. We are exactly 1 hour from Michigan City. Thanks for thinking of us. We have two beautiful girls 18 and 13, so they are not little ones anymore. We’ve always enjoyed though that no matter how old they’ve gotten they still want to do things with us. We have to enjoy that while we can. I feel blessed to have them because with everything going on with dad they pitch right in and help with other things.
AnonymousApril 8, 2009 at 2:25 pm
Just wanted to say hello and glad you found this site. Everyone is so knowledgable and helpful and it sounds like you have already gotten the benefits of our wonderful Dawn’s advise. She is invaluable. Especially when it comes to the IVIG regimen. It sounds like you and your family are a strong unit which is key to any challange. Stay in touch as we value you and your husbands experiences.
All my best,
AnonymousApril 11, 2009 at 7:47 pm
[B]Well, on Wednesday, thursday, and friday my husband had 3 more ivig but the same as last time 40g. We questioned the staff but they showed us the orders signed by my husbands doc. It’s is definetly helping:) ! 2 days a go he could stand from a sitting position on his own, and today we took the kids for a drive to see a favorite lighthouse of ours. Dad wanted to and is walking today. Still drop footed but I see improvement.:cool: Thanks again for all and have a Happy Easter all of you![/B]
April 13, 2009 at 8:15 am
That is good news, he is responding to the IVIG.
When my CIDP was at it worst this past summer I went thru 3 seperate IVIG sessions that were 3 days long (40mg) and they did NOT help me more than 60-70%. I felt better, but still had significant weakness like drop foot, slow walking, etc… The treatements were spaced 3 weeks apart, but still no real strength gains, just slight improvement.
I had a daughter I HAD to walk down the aisle for a wedding, so I sought a specialist. He put me on 60mg of Prednisone and scheduled 5 straight days of IVIG spaced NO MORE than 30 days apart. Well that fixed me up after 2 treatments. After 3 or 4 months of this I regained significant strength.
I have continued the regime all the while reducing my prednisone down to 5mg and increasing the time between treatments to 37 or 38 days. I even reduced it to 4 days instead of 5.
I can walk 3 miles per day 4-5 days a week (except for 10-12 days around treatment time). Hills and steps are still a major issue, but flat ground is my friend.
I have not dropped down to “Just” 3 days of treatment yet primarily due to the lack of results I experienced nearly a year ago.
Hope this helps….
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