Moiraine

Thanks for the replies. I wish you both well.

@Pistol Sometimes I am good about increasing the salt and sometimes I am not. Unless I write it down I forget. I've written it down on my to do list for the rest of the week, so I'll be good. I'll need to keep up with it. I have developed Sjogren's in the past five or six years to go along with the dysautonomia that I've had for decades. Trying to stay hydrated has been really difficult.

I was just watching a video on YouTube on dysautonomia. The doctor said to drink 2 1/2 liters a day. I sat down and figured out my water intake because I thought it was more than that. Yes, it's about double that...and has been for like the past 30 years, especially in the summer. I don't drink quite so much in the winter, but still probably 4 liters. I know people with dysautonomia need more fluid, but is this too much? If I don't drink this much I start to get muscle cramps, and the slow sluggish feeling of dehydration. Anyone else drink this much?

I tried it for small fiber neuropathy and was not impressed. It did help muscle pain though.

Hi, please next time go to the hospital where your doctors are. While it could have been the drug, I am thinking it was the stress on your body from the hours of having to do the clean out and being dehydrated. It was just the entire thing. I get sick when my body gets overtaxed...headache, nausea, weakness, I get shaky, etc. You get the picture?

Welcome. I'm new here too, but not new to dysautonomia. I've had it all of my life. It took me thirty five, almost thirty years to be properly diagnosed. It's not unusual for a long delay. I really hope that one day that will not be the case. Good luck with your appointment.

Thank you guys for responding. I don't feel quite so alone now. You know how terrible it is to live with dysautonomia and all of they "extra" things it does to you, then to possibly have something else thrown in the mix. I've gotten spoiled the past few years. I've seen the PCP, GI, and neurologist each twice a year with just a few other problems to deal with, nothing that I've not been able to handle. It took thirty years to get the motility disorder diagnosis, and thirty five for the dysautonomia. You can guess what I went through in that time. Then there were the years in trying to get me stable. I've been really spoiled for a while. Now it's back to the wait for this doctor to do this and for that one to do that, and see what this one is going to say. **** guys, I've already been through this and thought foolishly that I was done for a longer period than this. haha. Jokes on me. Guess I'm just kind of triggered. Anyway, I am sorry that you're all going through everything that you are. Kim, the long wait just suck. I hope they find out what is causing the lung involvement. Bladerunner, I wasn't impressed with the Mayo Clinic when I went there. I agree with you. Do you have a doctor now treating you for Scleroderma? Don, don't be afraid of the Interstim. I've had mine since 2011. It might give you some much needed relief. Kalamazoo and marcus, I am sorry for your suffering.

Do any of you have other health issues besides dysautonomia? I have the type of familial (not Riley Day) dysautonomia that causes gastroparesis, low blood pressure, etc.... I have been more or less stable (as much as we get) for several years now. I have a gastric pacemaker, Interstim, and take what seems like a pharmacy, but it gets the job done. This winter I started feeling bad, and in late Feb had an episode that didn't really feel like my normal symptoms. My neurologist did bloodwork and told me that he thinks that I may have a connective tissue disease like lupus. I'm going out of my mind waiting on the May 18th appointment with a rheumatologist.. In the meantime, the neurologist did a nerve conduction test. I don't have traditional neuropathy but he thinks that I may have small fiber neuropathy. He's waiting to see what the rheumatologist says before sending me to the dermatologist. If I have the SFN, it's going to be bad whatever the cause. I don't want the dysautonomia to have gotten worse...but I also don't want lupus. So, do any of you have any other medical problems besides your dysautonomia? It just seems like this is ENOUGH to live with.