//My EMG results – 7 years post GBS.

My EMG results – 7 years post GBS.

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By |2018-08-27T12:45:57-06:00March 20th, 2018|2017|8 Comments

About the Author:

Author of Happily Ever After - My Journey with Guillain-Barre Syndrome and How I Got My Life Back.

8 Comments

  1. Carol Griffin Arling December 3, 2019 at 11:50pm12 - Reply

    Holly, I believe the residual symptoms of gbs never go away. I was diagnosed with gbs in 1979, then again in 2010. The 1979 episode was the worst, the 2010 milder, however each episode’s symptoms lasted 18 months.

    My residual symptoms are episodes of painful pins and needles anywhere in my body, especially a day before a significant weather change. I have periodic numb spots, especially my left leg, or my right abdomen. I have a patch on my upper right back that “burns”, very aggravating. I use various numbing lotions there daily. Otherwise, I am very active and healthy. I exercise daily and keep my weight in range.

    My voice has gotten very low. I wonder if it could be related to the gbs. Nerve damage? My doctors warn me not to take a flu shot, so during flu season,I try to avoid exposure.

    My episode in 1977 did not appear to be related to any cause. The 2010 episode started after a severe gastritis related to a campylobacter infection caused by an infected egg, they thought.

    Otherwise, I am an active senior with (I feel) a high pain tolerance. I feel lucky to be active and happy and alive!

    • hollyaftergbs December 4, 2019 at 11:50pm12 - Reply

      Thank you for sharing your story! You’ve been through a lot and are a fighter!

      I agree that residuals will ebb and flow for the rest of our lives. We’re you ventilated? My voice has never improved after ICU.

      Happy to hear you are doubtful so well after having to go through this twice!

  2. lito August 16, 2019 at 11:50am08 - Reply

    i am 30 years out, but get very mild symptoms mimicking gbs/aidp every now and then. a flare up if you will. i thought, short of recurrence of aidp, there’s no flare up for aidp, unless its cidp. having an emg is a good idea because i never had one then

    • hollyaftergbs September 2, 2019 at 11:50am09 - Reply

      Yes I think that’s what a lot of people think, but there are definitely flare ups of residuals!

  3. James Amos March 20, 2018 at 11:50pm03 - Reply

    Appreciated your update. I connected with you about five years ago when a dear friend faced GBS. Thankfully, he’s doing very well. If your travels ever lead you to Kansas City I’d love to connect with you.

    • hollyaftergbs March 29, 2018 at 11:50pm03 - Reply

      So glad to hear you friend is doing better !!!

  4. Anonymous March 20, 2018 at 11:50pm03 - Reply

    Really good advice Holly! I think there should always be follow up with a neurologist especially when if a flair up happens! Then you would be seen quickly! Alanah also was not seen by a neurologist since onset in the ICU. I have pushed her Physician for a referral and we aren’t waiting for that appointment. She has twice has an issue with 1 really swollen foot ( when her dad and I went to Mexico a few years ago) and then both feet just a couple of weeks ago!

    • hollyaftergbs March 29, 2018 at 11:50pm03 - Reply

      Yes I think should be follow ups too. I’m glad I have a neurologist again, to have someone that truly “cares” about the disease and learning from it. It would make things easier when dealing with residual issues!!

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