New member — IVIG question

Welcome, glad to hear that you got a quick diagnosis. I am sort of confused about why he would send you home with no treatment of any kind. Does he think the attack on your nerves has stopped?? Seems to me like the attack will continue until you get either IVIG or Plasma Pheresis or both.

Jerimy

hi horse,

unfortunately some docs do not start ivig as soon as gbs is Dxed. ask your neuro if it was his daughter if he would wait & watch her nerves be destroyed. take care. be well.

gene gbs 8-99
in numbers there is strength

Your very welcome. We all do our best to help. I can’t say for sure if it is normal to be discharged before IVIG, I had a rapid progression so it wasn’t an issue. Sometimes they will try plasmapheresis before trying IVIG, both are used to treat GBS/CIDP though. I am not sure what the percentage is of people that get IVIG but I would guess pretty high.

Good luck with your IVIG infusion, they aren’t bad at all, take benadryl and tylenol before the infusion to help the side effects. Also I try and drink alot of water before. Take something to read or do, it’s a long and boring process.

Let us know how it goes for you. Good luck today.

Jerimy

[quote=horse]Thanks for the note Jerimy. Yeah, I guess I’m sort of confused too– my doctor friends (none neurologists) all thought IVIG would be the course of action. Is it not normal to be discharged if the symptoms are limited to fingers, toes, legs, face? What percentage of patients with these symptoms typically receive IVIG?

Just received a call from the neurologist and he’s going to check in again in the morning and likely start outpatient IVIG.

I’ve done a lot of things in my life that would be considered scary (e.g., hanging off the side of mountains) but never been scared like this. Think it’s not knowing how far GBS will progress. Also a feeling of helplessness that I’m not accustomed to. Thanks.[/quote]

Hai…….welcome to the world of caring people………pls go to the neurologist immediatly, the pains which come , if u r not taking the ivig will be more, i pray to god that these pains should not come to anybody. And dont go home..it is much better to stay in the hospital if ur wife is a nurse also………after the corse of ivig u may require PT which will help to do ur normal works….dont be afraid……..be postive……..and confidant …….with ur will power. Bye take care…………

Sridar

horse,

I did not receive either IVIG or PE, the neuro felt that my age (20) at the time was working in my for me, I was quite healthy as well. But, I was hospitalized during the time so he could keep an eye on my progress.

I do agree with the others about pushing the dr for the treatment though, I have read here on the forums about how IVIG has helped those it was given to.

I believe the fear is a natural reaction, probably because of the reason you stated, having no control over the situation can be a frightening thing. Just keep a positive attitude, keep your faith, and just fight.

My weakness grew slowly worse. Consequently, if I had an option, I’d be getting a second opinion from another neurologist, right way. The attack must be quelled on the peripheral nerves to prevent damage before symptoms worsen. Best wishes.:(

hope you take it seriously and consult another doc, time urges too to immediatelt take a decision before it’s too late, i am praying for you already

Welcome to “The Family” 🙂 This is a good place to ask questions and to get support. Gene usually tells our new friends that GBS stands for “getting better slowly” ~ so don’t push yourself to fast to soon. Good luck!

It’s my understanding that the sooner you use ivig or plasmaphoresis the faster response rates and the residual deficits. IVIG is real low risk . They clean and filter the virus out 1st. Best to premedicate with benedryl and some us prednisone10 mg(controversal)also. If asked to take a chance again I would answer the same–Absotulety YES for the ivig. It started the revearsal within 48 hours and it kept me off the vent. Dr.Shawn

Hey there. I was recently diagnosed with GBS as well, with similar symptoms as you (still walking, but numb feet and hands). My neurologist actually strongly recommended starting IV-IG treatment immediately in an attempt to halt the progression of the disease. I agreed, and was hospitalized for 5 days during treatment. Worst side effect I had was a bad headache and some nausea. I am glad I elected to start IV-IG, as to have stopped the progression of the disease (or at least its symptoms) just above my knees.
The main reason for me agreeing to undergo treatment immediately was that the side effects of the treatment seemed to be a lot less severe than the effects of the disease if left untreated.

It been almost 1and a half year now walking but getting wors is ther a time wher its to late?

God bless

hi tamara & welcome,

i know gbs is anything but normal, but getting worse during recovery is not usual. can you pls give us more info. thx. take care. be well.

gene gbs 8-99
in numbers there is strength

Tamara,

Gene is right. Getting worse while in recovery is not ‘normal’ as such. Many have bad days or weeks because they have been overdoing it, and fatigue, weakness and pain do happen then. It would be good if you tell us more, explaining symptoms etc.

My hands are getting weak very cold or hot they hurt and shake no matter what i do little or alot Right hand is worse i am very tired so iam takeing sentrum vit helps with energy iam trying to keep up with aur home busy busy busy i do alittle and then get on the couch a little my body hates me lol its hard to sit very long 10 min or longer it hurts eather way i go i hurt every wher its like i am a solid bruse it hurts alot to be bumped Thanks God bless

Tamara,

There could be a number of reasons for all these symptoms or residuals. Obviously the best thing would be to go to a doctor or neurologist, maybe the one who treated you when you had GBS if you were happy and comfortable with them.

Some [I]possible[/I] reasons for the way you are feeling …… Firstly, it is possible to be going through a flare-up of residuals. Often this happens when we have been under some stress or overdoing things. Many go through this and do worry that they are having another GBS attack. There is a very slight possibility of having a reoccurance of GBS, in which case the IVIg you were inquiring about would help, but only in the initial 4 weeks while your body is under attack. And another possibility would be the possibility of having CIDP, but I dont want to even touch on that until you have been to the doctor and discussed all possibilities.

If fatigue and pain are residual problems from your GBS, there are medications that can be prescribed by your doctors that would be able to help you deal with those problems. IVIG however, is not an option if you are dealing with residuals, as IVIg only helps (as I said earlier) in the initial weeks of the GBS attack.

Sooooo, long story short, this is something that is effecting you and obviously is worrying you. The best would be to go to a doctor/neurologist and explian, in GREAT detail your symptoms and concerns. There are so many things that ‘could be’, unfortnately there is no definative answer.

Thanks hope your day is filled with Happyness and love today i will take All your advice and ponder on it God bless

tamara,

ditto ali. most likely you need much, much more rest lying down. also neurontin for the pain. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.

gene gbs 8-99
in numbers there is strength