Yea the nutritionist I saw wasn’t that helpful either. Unfortunately it’s all trial and error. Stick with the IV hydration if that works for you. Be insistent with your doctors!

Nutritionist gave me really bad advice which made me worse! I am asking for more IV hydration. Thank you! 🙏

Ugh Nancy! I’m so sorry for you and all of us who have to deal with this disease. It can be so frustrating at times until we figure out how to deal with these symptoms. Baby steps at least now maybe they will give you the hydration as part of your regimen. Maybe also speak with a nutritionist.

I ended up in ER with a week’s worth of impacted poop. After hours of unspeakable suffering, they gave me an enema that worked! 2 days later I went for my weekly treatment and got IV hydration which seems to have helped me with other symptoms, such as balance and dizziness. I also have blood vessel and kidney involvement and autonomic neuropathy. I am constantly hydrating to no avail. This AL is robbing my body of fluid. I’ve requested IV hydration on a more regular basis. Maybe this is helpful to others?

Just 💩