February 10, 2018 at 2:23 pm #113880
I suffered a fairly typical GBS attack in late November of last year, 2 1/2 months ago, affecting mostly my hips and shoulders. I was hospitalized for 6 days and responded immediately to iVig treatment. My recovery proceeded well and I’ve regained full function and much of my strength although still have lingering symptoms – tremors, weakness, numbness, tingling – but they’re manageable. My greatest difficulty was with some troublesome findings in my EMG tests suggesting a diagnosis of ALS in late December. That neurologist recommended a second opinion since she wasn’t certain given that I had, and still don’t, any clinical signs of ALS. It took a good while to get into to see a neurologist at Washington University in St. Louis where we live but I finally got some good news on the diagnostic front a few days ago which relieved my mind greatly. I’m now in a much better position to trust my good days more and put less stock in my bad days, thank God!
One thing I discovered a few weeks back is that I am more susceptible to anxious moments now that come out of nowhere, and those moments often result in heightened symptoms. So I’ve learned techniques for calming myself which does help. I know that everyone recommends avoiding/reducing stress when dealing with a neurological condition but I think there’s some misunderstanding about how that looks. We often cannot avoid our responsibilities or reshape our lives instantly but we can accomplish a lot by “how” we go about carrying on. It likely will be different for each of us but speaking for myself, I turn to the Bible which is a great way to find comfort and equilibrium, not to mention wisdom and guidance. For you it may be meditation, painting, singing, or just going to your “happy place”. Whatever is your preference, don’t neglect this component of recovery.
Equally important, I think, is diet. For those of us who had pretty much gotten used to eating whatever we wanted, it takes some education and patience while we transition to a healthier diet but it can make a huge impact. Why not give your body every advantage in its attempt to recover? Keep a diary of what you’re eating and how you feel in the hours and days following. If you see a pattern, try eliminating that component of your diet, replacing it with a healthier choice. If it seems to help, leave it out for now and see how the trend proceeds. You can always try adding it back later. I’ve given up alcohol and cut way back on caffeine and sugar. My Mom is allergic to gluten, dairy, and beef so I’ve given those things up for now. I’ve also taken to drinking at least a gallon of water a day, some of which is augmented with electrolytes. If you are not already focused on diet I encourage you to do so. You won’t regret it.
I’d like to thank all of you in this forum who share your experiences, symptoms, challenges of many kinds, and helpful tips. They have made a huge positive impact on my mental state. As you all know, dealing with a sudden and severe onset of neuropathy can be perplexing, frightening, and depressing so knowing that others are having similar experiences does wonders.
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