So confused!

This topic contains 4 replies, has 4 voices, and was last updated by  Erik Russell 5 months ago.

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  • #116223

    Jill Mitchell
    Participant

    I was diagnosed with GBS a month ago. I had numbness go up my legs,arms,and face. Heart rate went from 60 to 130 in seconds periodically. High blood pressure.Very tired. After plasma treatment, severe head aches with spinal pain and numbness. Improving daily, cramping in hands now. Still spinal pain. Did I have a mild case or misdiagnosed from spinal tap? EMG coming up. My concern is i have a cousin with MS. Any info would be appreciated.

    #116225

    Electra
    Participant

    It sounds like you have a fairly mild GBS- maybe a variant? I’m about 5 years post-diagnosis. I try to stay physically active to keep the spine/back pain to a minimum. Blood pressure/heart rate do fluctuate. Like MS, each case is a little different.

    You didn’t say why you are concerned because of your cousin’s MS. GBS and MS can seem similar (and I have read up about coping mechanisms for MS for insight) but they “operate” differently. Someone else will probably address this, or by now you’ll have researched it further?? (If you like to read, find Donna Jackson Nakazawa’s Autoimmune Epidemic- or any of her other writings). Autoimmune disorders can “run” in families with genetic predispositions. Can. But each family member can have a different diagnosis entirely. Or only one member has any kind of Something.

    #116228

    GH
    Participant

    Why do you think you might have been misdiagnosed? Was the spinal fluid test supportive of GBS?

    #116231

    Jill Mitchell
    Participant

    When I left the hospital results were still pending. I go on Friday to see the doctor. Definitely improved with IVG. Cat scan was normal. MRI showed white matter they say was from the migraines from the GBS. So little information. Thank you for responding.

    #116241

    Erik Russell
    Participant

    I have a mild case of GBS since 2008. Doctors tried IVIG which didn’t help. You have to stay active to keep your muscles strong. I’m not active so I’m weak and sometimes wobbly. I tend to drop things as my fingers are numb. My feet are also numb but very sensitive, which is weird since they are numb. I can’t walk on hard surfaces as it hurts. Gabapentin helps with the weird sensations. I always look down when I walk as I can’t recover fast enough after tripping. So far I haven’t fallen. Anyway, each case is different, so hang in there!

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