Hi, My dad was diagnosed with GBS/ Miller Fisher Variant the end of Apr. 07. He is also 63, and your moms situation sounds alot like my dads. He was in a normal hospital room for 2 weeks until he got an infection (pneumonia) then they finally moved him to ICU and had ventilate him. He was on the vent for almost 1 month until they did the trach to keep his airway open. Even then he needed the vent to help him breathe for about another week. He still needs occasional oxygen but doing a lot better. Monday will be 8 weeks and he is now in a rehab center. I am going to see him today. It’s a slow slow process of getting better. Your mom and your family are in my thoughts. Kim

if the ivig did not work, she needs plasmapheresis, the only other thing in the world she can try unless it turns out to be chronic gbs [cidp] which is unlilky, but possible. take care. be well.

gene gbs 8-99
in numbers there is strength

Hello Kim and welcome. Sorry you had to find us but glad you did. Give the IVIG some time to work. Keep in mind that IVIG stops the attack on the myelin sheath around your nerves and the nerves itself in some cases, it wont however fix/correct any damage that has already been done. Your body will have to heal the damage. I forget what the rate is at which it repairs, but it is slow.

Pain in the toes and feet is the main complaint for many of us, I know I slept without covers over my feet for a long time. You should ask your Neuro about a prescription for Neurontin/Gabapentin or Lyrica which will help you with the pain in your feet and toes. I am still on Neurontin and it has been almost 3 years for me but it helps tremendously.

I didn’t have the circulation issues that I can remember but I do remember others mentioning it, so I will let them respond to that. Anyway take care of yourself and if I can ever do anything or answer a question feel free to email me or send me a private message.

Take care,
Jerimy

[quote=kim]Hello, great to read the posted info. It has been wonderfully informative. Im new to this, had first experience on April 17th while driving. To make a long story short, my Neuro says its GBS. I have had two of the IVIG treatments and will have 3 more next week. (No improvement yet, is there still hope?) According to the posts I have read, It seems I have been very lucky that I havent had to be hospitilized.
Has anyone ever experienced pain in the toes and feet? I cant use covers at night to sleep, it hurts my toes to badly. I also have noticed that if I prop my legs, or feet on something for too long it leaves indents in the skin for a long.. period of time. My feet look like they have aged 20 yrs in the last few weeks. Lack of blood supply or nerve issues? It scares me quite a bit. Does this sound familiar to anybody. I apprecaite any help.
Thanks and God bless!:)[/quote]

Hi Kim,

Welcome! The feeling sensations in your feet is called “paresthesia”, and includes feelings of tingling, numbness, pain, etc. As Jerimy stated, neurontin is very good for neuropathic pain, and is used by many, many GBS patients, and others with peripheral neuropathy.

How did your doctors diagnose your GBS – EMG/NCS, spinal tap, or other tests? IVIG: [QUOTE]I have had two of the IVIG treatments and will have 3 more next week.[/QUOTE] The IVIG standard for GBS is 2 grams/kilogram body weight, and is normally given over a 5 day period. EX: A GBS patient that weighs 160 = 160 divided by 2.2 = 72.7 kg x 2 = ~145 grams total IVIG. The 145 grams is usually given over a 5 day period, or 145 divided by 5 = ~29 grams/day for 5 days. NOT 1 treatment today….1 next week, then 3 this week.

I don’t understand your statement “I have had two of the IVIG treatments and will have 3 more next week.” What IVIG protocal is your doctor using? What is your weight, how many grams did you receive each treatment, and what were the dates of each treatment?

As Jerimy also stated, IVIG is a treatment…not a cure. However, for you to receive the benefits of this medication, it must be administered properly. Please do some checking…do not be afraid to ask questions concerning your health.

Best regards.

Jethro

hi kim
welcome to our family..feet are a huge problem with gbs..i still hate to have mine covered while i sleep 2 1/2 years later. i do keep socks on all the time because for some reason my feet sweat really bad which also causes my hands to sweat..but the socks don’t seem to bother me. the neurontin definitely helps, if i miss a few doses i definitely pay for it. take care and keep on the forums..there is a wealth of information.

stormy