June 20, 2020 at 9:55 am
I am 74 years old and was diagnosed with GBS 7/19. Before that I was very physically fit and active. The diagnosis came after a severe gastro virus and upon diagnosis, I received 5 IVIG infusions. The severe pain and deterioration lasted 6-8 weeks, then the long road to recovery began. I slowly made significant progress until 3/20, when I began experiencing hand tremors. That worsened, along with sleep disruption, deteriorating balance, appetite loss, and overall body fugue. The neurologist has run extensive bloodwork and brain MRIs, finding nothing. She has prescribed propranolol and that has helped with the tremors, but it is so disturbing to have such a setback. I recently went back to PT after it reopened from COVID and she measured a significant decline in my overall recovery and would not resume as she was concerned it may exacerbate any problems that may be occurring. I would appreciate any feedback from others that have experienced any similar symptoms and what was done for you. Thank you in advance for your consideration.
June 20, 2020 at 3:40 pm
It sounds like your GBS may have been triggered by a Campylobacter infection. GBS is almost always a single event and does not return after its normal 4-6 week run. It is not uncommon, however, to experience symptoms for many months after the initial onset of GBS.
If your condition continues to worsen, you should be tested for CIDP. The following key tests can help diagnose CIDP:
– Check for diminished or absent deep tendon reflexes.
– A spinal tap, to analyze cerebrospinal fluid for elevated protein levels.
– A Nerve Conduction Velocity Study that measures how well individual nerves can send an electrical signal from the spinal cord to the muscles.
Should you be diagnosed with CIDP, ask your doctor about Plasma Exchange and corticosteroids for treatment.
For treatment now, you may wish to consider a combination of Vitamin B12 (Methylcobalamin 5000MCG) and Alpha Lipoic Acid (1200MG – 1800MG) daily to help with peripheral neuropathy, tremors, and fatigue. These over-the-counter supplements have helped some who have suffered from GBS and have few side effects.
June 21, 2020 at 10:08 am
thank you for your input. I will discuss this with my neurologist.
June 23, 2020 at 9:32 am
Jim, you seem so knowledgable of these issues. You are so kind to help out the people on this forum. We have gotten an appointment with the neurologist for today so the journey begins again.
June 23, 2020 at 7:26 pm
Just an FYI..the neurologist thinks these new symptoms are CIDP and has ordered the first round of IVIG to begin shortly. She feels if it alleviates the symptoms, then her diagnosis is valid and will order a 2nd and 3rd round. We are excited to be doing SOMETHING about this and will resume PT asap. Thanks again for your input.
June 23, 2020 at 8:49 pm
I’m glad to see you are addressing this promptly, that improves your chances for a better recovery. I wish you all the best in getting your health back on track! Here is some info to help you with understanding and treating the CIDP:
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