IVIG made me worse.

This topic contains 2 replies, has 2 voices, and was last updated by  jon swanson 1 month, 1 week ago.

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  • #116398

    jon swanson
    Participant

    GBS patient, had IVIG at 5 months. At 7 months now. (A lot of stupid doctors in san diego.)
    Before the ivig I was experiencing rapid recovery. For instance I was able to lift my paralyzed left leg up in the air from my bed. Could not do that a week earlier. I fully expected to be able to walk after the ivig. Instead it knocked me back several months of symptoms and my recovery progress basically stopped. Wish I never took the gammaplex.

    #116443

    Thomas Banditelli
    Participant

    Hey Jon, I feel your frustration. I had 20 IVIG treatments since January 2019. Just found out my kidney function is now a few points above failing. Four days a week each month with a month off in May. Urine tests with the start of each session and nothing ever said about failing kidney. Dr said I should listen to my Neurologist and have IVIG again if they think it would help my GBS. No way will I ever go thru that again. I believe it helped the first few treatments, but the rest were a waste of time and money. Thank God my medical insurance paid the super expensive cost. I’m doing PT twice a week with very slow progress. Dealing with GBS for 18 months and in a wheelchair all that time.

    #116445

    jon swanson
    Participant

    All I can say is wow! Yeah you could not pay me to take IVIG again. I’m concerned about my kidneys also. Have had uncontrolled diabetes for 20 years too. It’s under control now since I lost 50 lb.s due to GBS. I am in my 8 month of recovery and about 75% “fixed”. Just started a little walking without support. I can’t stand the stories here about people being diagnosed in the 1st month, treated with IVIG and walking again. This forum can be a real downer. I live in san diego so I use pot regularly to deal with the mental health issues otherwise I would have blown my brains out months ago.

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