How do you know if the IVIG is working? Will you be on treatments now every 4 weeks for life or does it ever get to the point where you can go longer between IVIG infusions? I see my nurse in about 3 weeks but I don’t have an appointment with my neurologist for follow up yet. I guess after seeing the nurse for follow-up then I will get to see the neurologist to talk about my treatment plan going forward. I am anxious most of the time because I don’t know much about my future or how this disease will affect me. I get scared when I go in this forum because I don’t know how I will handle it if I become as disabled as people on this forum. It seems everyone on this forum is so bad in terms of the disease and that scares me because do most people progress over the years from mild to severe or are there people living with the disease that go on with life and continue to me mild and never progress to the sever, disabling form.

Has anyone tried to go after the government and get compensation for what the flu shot did to them. I think it is only right the since I have to live with this condition for the rest of my life because I trusted the government that they should help compensate me so that I can pay my medical bills and just cost of living. I would not even know how to begin going after the vaccine compensation fund.

I started to take 5000 IU Vitamin D3 once I was diagnosed with CIDP. I have a friend who has had MS for many years and her neurologist had her start with a high dose of 6000 IU daily. He said that there is great new research that points to Vitamin D3 really helping neurological problems. I figure it can’t hurt and I don’t get outside as much as I use to when I was younger. I dont’ think I feel any different but hopefully it is helping me fight this horrible CIDP that I have been struck with.

Maybe you don’t have GBS but CIDP? That is the chronic form of GBS. I had problems with the flu vaccine back in November 2010. I got the vaccine on November 5 and about 10 days after the vaccine I noticed I had a numb feeling in my right foot. No other symptoms, just a weird numb or tingling feeling in my foot. It did not progress but stayed the same. I saw my GP and she did not know what it was so I went to a neurologist. She did a EMG and NCS (electromyelogram and nerve conduction study) on my legs. It showed slowing of my nerve conduction. She said this is usually caused by demyelination of the myelin sheath. So she did a MRI and nothing showed up for MS leisions. She did a whole batch of blood tests…negative for everything, all other auto immune diseases, lymes, metals in my blood, but my protein level for something was elevated. So next we did a lumbar puncture and I had elevated protein in my spine fluid. She said it was probably CIDP and we started IVIG treatment. It was 5 monts from onset to my first IVIG treatment. I have very mild symptoms such as the same numbness in my legs and now I have some muscle aches like charlie horses in my calves (worse when I walk or over do it), shaking if my hands and a very mild weakness in my hands. I only notice the weakness if I use my hands for something for a long time. I need to rest them. I would see a neurologist and ask about CIDP for sure.

I just received my first round of IVIG treatment too a few days ago. I have recently been diagnosed with CIDP and this is all new to me. I went to an infusion clinic for my treatment. It was really nice. The nurses explained everything to me and even talked about my CIDP and gave me information about CIDP. She started the infusion slow at first and increased it over the 4 hours I was there. They checked my blood pressure about every 20 minutes as she said the increased dose can sometimes cause a high blood pressure. I was up at the highest infusion rate by the end of my 4 hours without any side effects. So when I came in the next morning she started at a higher rate and increased it to the highest rate…I only took 2 hours the second infusion. I went home and felt great. But later that night at about 2 am i woke up with the dreaded headache. I iced my head and took Tylenol. It took about a day and a half for the headache to completly go away but I functioned and went about my life with the headache. I have not really felt any difference due to having the IVIG yet. I don’t know how I will know it is working or treating my CIDP. I do feel good. I have energy (Never got the fatigue), I have shakey hands but I did before the IVIG too. I don’t have any pain but a pain behind my left knee. I don’t see my doctor for about 3 or 4 weeks. I started to keep a daily journal to see if any of my symptoms change or new ones appear. Do you usually need a few more treatments of IVIG before you see results? I don’t really know much about the after effects of IVIG. They used Gamunex which is a liquid an does not have sucrose in it. Suppose to be a good brand to use.