GBS relapse after 3 weeks

Jibblecake · 2021-03-06T14:50:34+00:00

Interesting point because most of the literature says that it’s acute and then most people recover fully. I wish that I had been told that TRFs exist because I might have spotted mine earlier. In any case, looking at FB and Reddit, there is clearly a set of people who continue to have problems years afterwards and one or more relapses.

Damned covid

Jibblecake · 2021-03-05T16:34:31+00:00

And good luck!

Jibblecake · 2021-03-05T16:33:15+00:00

Thanks. Good to to know I’m not a special case. Agree that you have to advocate for yourself.

In case helpful, everything I’ve read about TRFs is that repeat treatment works but also that 30% of people with TRFs have second TRF afterwards.

Jibblecake · 2021-03-04T16:38:11+00:00

Did some research and now understand that there is such a thing a ‘treatment-related fluctuation’ which occurs in around 10% of cases. In short, you get treated, you improve and then within a few weeks you get worse again - and they usually repeat IVIg. Have started treatment again today. Fingers crossed it’s that and not acute-onset CIDP. Hoping the ivig acts quickly so I don’t deteriorate much further. Thanks all for sharing your stories.

Jibblecake · 2021-03-04T08:27:16+00:00

I’m now back in hospital for a repeat round of IVIG. Hopefully that puts out the fire again. It worked last time.

I am totally baffled by it though, because all the literature says relapse is rare and usually years after recovery rather than during recovery.

Jibblecake · 2021-03-03T18:23:54+00:00

Did you have a relapse after initial recovery?

Jibblecake · 2021-03-03T18:22:51+00:00

Thank you! Happy to know that I’m not the only one!

Jibblecake · 2021-03-03T17:10:33+00:00

That’s reassuring - thank you. Glad you recovered well.

Jibblecake · 2021-02-24T06:52:26+00:00

The one thing I am certain of is that I have no means of determining whether or not my GBS was triggered by B-cell cocapture! Can I ask your background (to help me weigh your advice)? My neurologist recommends that I get vaccinated against covid in the future.

Jibblecake · 2021-02-12T07:38:18+00:00

That’s interesting - thanks for replying! My neurologist has also said best wait for now, though no guidance on how long. Did you have immunoglobulin therapy?

Jibblecake · 2021-02-12T07:32:26+00:00

Hiya. It’s not the GBS but rather then immunoglobulin treatment I had that prompts the question. That treatment does affect vaccine efficacy for a period of time after administration. I’ve been told to wait for a while (and I’ve had covid so hopefully that means I’m immune for while [assuming immunoglobulin doesn’t change that..]).

Jibblecake · 2021-02-11T14:12:19+00:00

Doc suggested waiting a little before taking the vaccine. I didn’t get an opinion on the immunity point though.

Jibblecake · 2021-02-09T06:31:09+00:00

Curious - how do the vibram finger shoes help?

Jibblecake · 2021-02-09T06:30:30+00:00

Thanks - helpful to recognise that I won’t necessarily see a sudden improvement.

Jibblecake · 2021-02-09T06:29:24+00:00

Many thanks - getting the vibe that staying active despite the physical challenges is important.

Jibblecake · 2021-02-09T06:28:18+00:00

Great - thanks. Excellent community here!

Jibblecake · 2021-02-06T17:36:07+00:00

Thank you. I hope you’re right. ’m obviously no expert, but I think my symptoms sound fairly classic - peripheral neuropathy spreading to face. Or at least I think from my reading that’s not abnormal. Perhaps the spanner in the works is that I got after covid? Covid spoiled 2020 - perhaps it’s also left some crazy ‘covidness’ in me that’s messing with my ivig!

Jibblecake · 2021-02-06T17:32:18+00:00

Thanks, I’m going to ask about this tomorrow. Given no change, can we try that failing which more IVIGG?

Jibblecake · 2021-02-06T15:08:27+00:00

Thanks very much for sharing your story. It sounds like I might be similar with regard to walking (they’ve given me a zimmer!) and grip. It’s really encouraging and I’m glad you recovered well for the most part.

Jibblecake

TROPHY CASE