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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
Average time for full recovery? - GBS\|CIDP So anything is possible There may be an average period of recovery of the motor nerves for GBS sufferers which is less than 2 years, but for muscle recovery, I think that the average recovery for those who had severe GBS, the average recovery period must be several years
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
Cold weather and muscle weakness - GBS\|CIDP Has anyone had the experience that their muscle weakness increases as the weather gets colder? We are having an early cold snap and I seem to be weaker than normal This seems to be effecting my balance as well Any suggestions
Your top signs that your CIDP is coming back getting worse Here is the order for myself: 1) Numbness in the fingertips (both hands but right hand worse) and then numbness in my left foot (right foot has zero problems) 2) Problems walking up stairs and getting up from chair, bed etc 3) Loss of strength in my hands (again right hand much worse than left)
Does anyone else have muscle twitching in recovery? - GBS\|CIDP October 3, 2008 dx with GBS the day my life changed — for the better or worse From the first drip of IVIG it seemed I was algeric to it Aseptic meningetus Wasnt realzed until after the 3rd dose Then IVIG stopped Honesty from the medical world would be great Having us speak to others who have this will be a comfort to the familys nd Dx’d
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