New symptoms worried
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January 24, 2015 at 5:21 pm
I am post GBS 18 months a severe case with incomplete recovery. Still need arm crutches to get around and wheelchair for long distances like conventions and the electric scooters at the big stores. As long as I have my crutches I don’t get as many dirty looks
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January 24, 2015 at 5:34 pm
Wow that did not print post all I was asking. My recovery has been slow and incomplete (arms, legs, bowel, bladder and core)etc. About two months Ago i noticed difficulty swallowing and increasing tingling and numbness in my face. has anyone had to deal with this so long after onset? Also has anyone found a way to turn down the ringing in the ears? Anyhow any suggestions would be appreciated Thank You Bar2
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January 25, 2015 at 11:46 pm
Your symptoms sound a bit like mine and I have CIDP and a variant called Miller Fisher Syndrome (MFS). It is the MFS that I think you may want to look into as a possibility. There is a good booklet about it here:
http://www.gbs-cidp.org/wp-content/uploads/2012/01/MillerFisherSyndrome.pdf
Additional info and other resources can be found here:
http://www.ninds.nih.gov/disorders/miller_fisher/miller_fisher.htmAnother possibility might be Diabetic Peripheral Neuropathy (DPN). An estimated 60-70% of Diabetics suffer from peripheral neuropathy. Read a DPN informational brochure here:
http://www.neuropathyaction.org/patient_resources_news/brochures_downloads.htm
Additional info and other resources are here:
http://diabetes.niddk.nih.gov/dm/pubs/neuropathiesIf it seems you may have MFS and you want to confirm or deny it, you should contact an experienced neuromuscular doctor.
GBS symptoms can last several years and it takes the body a long time to regrow damaged myelin from GBS/CIDP/MFS attacks. I still have symptoms 7 years since my initial attack. Nor has all my face numbness disappeared. Some of us with more severe attacks will have residuals the rest of our lives. Have you had IVIg and Plasma Exchange treatments? Recently?
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January 26, 2015 at 9:59 pm
Jim I have been reading the forums for a while just didn’t feel I much to add. Your comments are always on the mark and you give good references and links thank you. I don’t have diabetes or really anything else before GBS. When it hit I had the spinal tap then IVIG 5 days. We read about the MFS and not surprised that you suggested it. All the time now and esp when trying to sleep my face feels like it’s crawling tingling weird etc. my nuerologist wants to do a nerve conduction test to determine if there is any change in my limbs.we don’t have the funds. At what point if my symptoms progress should I go to the hospital or that they would recommend PE? When the nuerologist tested me last year she said that I had extensive axonal damage that is permanent. Since then I have only been treated symptomaticly. It has become clear that the battle is 90% above the shoulders! Your definitely right some such as your self are dealing with very difficult residuals. At least we have company.
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