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GBS-chance of recurrence - GBS|CIDP Foundation International Forums I had GBS – Miller Fisher Variant in 1997 when I was a teenager, we don’t know what caused my GBS it was either infection or vaccine since both happened at that time Would it still be very rare to get GBS a second time around with this medicine, or would I be “playing with fire” in this case?
Axonal Guillan Barre (AMAN) - GBS\|CIDP Hello! I’m reaching out to the few of us that have been diagnosed with the AMAN form of Guillan Barre (Acute Axonal Motor Neuropathy ) I say the “few of us” because from what I know, we are the exceedingly rare form of Guillan Barre… perhaps 3,000 cases world-wide and most of them are in Asia The viral nervous system damage we suffered is due to an attack on our actual nerves (axons
Effects of GBS over 2 years later Hello, I had GBS and was hospitalized for two weeks in August of 2015 Recovery took a long time Now, 2 years and 4 months later, I have concerns that I can’t find a concrete answer on I still experience muscle soreness and pain, in my knees and down to my feet, and in my forearms and hands At times, my hands can be very shaky, especially in my fingers Also when doing physical things
For those who get regular IVIG infusions, how often do you . . . - GBS\|CIDP Just out of curiosity, for those who get regular IVIG treatments for their CIDP, how often do you get them? Once a week, once a month? Do you feel that such a maintenance keeps symptom free or something close to it? Thanks, Bryan
Why Does Recovery Take So Long? - forum. gbs-cidp. org I’m curious why they say recovery takes so long from GBS? If GBS supposedly peaks at 8 weeks, then what is the process after that? Is it that demyelination is taking place up to 8 weeks, and then after that the nerves start to heal and recover?
Who Has the BEST CIDP Doctor and Where???? - GBS|CIDP Foundation . . . Word of mouth is the best way to accomplish lots of things I am looking for an alternate CIDP doctor I am willing to Fly but Prefer NE USA Looking for a take action type doctor that is highly skilled with treatment regiment for CIDP A doctor that does not give up and takes a high level of personal interest in the treatment of their patients Who is your Doctor and why do you like Him or
Ocrelizumab - a breakthrough? - GBS|CIDP Foundation International Forums Ocrelizumab reduced the advance of MS-related disability by 24 47 percent in a clinical trial! Ocrelizumab, under the brand name Ocrevus, is awaiting approval by the U S Food and Drug Administration The FDA had been set to approve the drug in December 2016, but recently extended its review into March 2017 CIDP occurs when the immune system attacks the protective sheath that covers nerve
Flare Up at 6 months post GBS diagnosis - GBS\|CIDP I was admitted on October 6, 2016 with advanced GBS I spent 4 weeks in ICU on a ventilator receiving IVIG during that time and then an additional 4 weeks in rehabilitation hospitals before returning home for outpatient therapy The 6th of April was 6 months since I was admitted About 4 days ago (April 11) I started to struggle with tingling in my feet again It has since spread up to my