@Danielle_Kelly

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Danielle_Kelly

Relapse dilemmas

My legs don’t want to work. They will for short distances and/or time periods. Which seems to make it hard for people to understand. Which I guess is why after I had to leave work early yesterday my DH asked if I wanted to go to the zoo. He thought walking around the zoo would be “different” than being at work. I told him it would, but not in a good way. It would be more time between sitting down, outdoors where it was 80+ degrees, and farther distance. In short, more difficult in every way. My neuro ordered lab to make sure this isn’t an infection of some type. And repeat MRIs to look for new lesions. If there aren’t that doesn’t change how I feel, or my treatment. If there are, I suppose they’ll change meds. I’m the meantime, nothing. My neuro doesn’t like steroids, which is what I know would get me back to work fastest. I’ve been reading about stem cell treatments in Panama since before this flare after a friend loaned me a book. And today I’ve been reading and watching the Terry Wahls website, which I avoided when I was diagnosed for whatever reason. I think the warning at the beginning of her TEDx talk. Has anyone found a better way to explain to people the ability to walk but not too far? To function, as long as you can take a nap in 3 hours? Has anyone tried stem cells? Or the Wahls protocol? Or waited on a relapse to end without steroids? I’m pretty sure my first episode was about 18 years ago, but I was young and pregnant and diagnosed with fibromyalgia despite the fact that my complaint was weakness and not pain. That lasted about 3 months. Other more minor symptoms continued to come and go for years. I was finally diagnosed with MS a year and a half ago during an episode that started like this one but was cut short by high dose steroids before my first appointment with this neurologist. I haven’t felt fully healthy at any point in the past few years, but episodes like this are especially frustrating. Thanks for listening / reading. I just want to have energy again. Energy that if I really think about it I haven’t had for a really long time. It’s worse now but I can barely remember anymore when it was good.