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Hi Tiffany, welcome to DINET!  Feel free to ask everything you need to know. It is so nice to know you're not alone!

Thanks Katie! I love being part of DINET's volunteering family, it's a great opportunity to give back. I felt a strong need to give back as I have learned SO much here and found some life long friendships! I just love DINET!!!

I hope it was just a glitch but if you're seriously worried you may want to call your doctor! I couldn't tolerate Florinef and don't know what is a "normal"(everyone is different so I think there is no normal here!) dosage! Perhaps others can chime in? Hope you'll be on the up soon katcanny!

Cool! Thanks a lot, really useful!

So sorry katcanny! Hope you will be on the up real soon!

Welcome everyone!!!

I'm sorry that happened Gertie. I think stress could really do this to your body. I know from experience that surgery (on the body not dental) does that to mine. It's not that I'm specifically stressed about surgery but more what it does to my body!

Loved reading this. Thanks for sharing Sarah!

Hi Momto! Welcome to DINET, I'm glad you found us! Being a mom myself I realize it must be so tough to see your "babies" struggle. So far it seems my boys are okay (though one of them has had fainting and hypermobility issues) but there are more moms here fighting to find the best treatment for their kids. Hope they will chime in to share stories! In the meantime: stay strong, there will be answers!

Looking forward to meet you new members!

Hi everyone! Do feel free to share your stories and ask what you need to know. We have so many friendly and understanding members who really make the difference. Know you're not alone!

I'm so sorry more is added to your daughter's "list". I think I remember we had another member mentioning this (quite a while ago). At least the good news is that asperine helps with the burning! Sending good thoughts!

Thanks Sarah! I love to read our warriors stories!

Promising! Thanks for sharing Katie!

So happy for you Katie!

So sorry Nijn, it's always something isn't it?! 

Hi BeachLover! No cramping or pulled muscles here just wanted to welcome you!

Thanks a lot Rachel!!!

Thanks to everyone involved! I love reading the newsletter!

Welcome everyone!!! We're happy you found us! We love you to participate at our forum, it's so much better to know you're not alone!

Happy to have you back, though for all the wrong reasons. I am 100% with you, you may need to take a good breath but never ever give up fighting! We have several moms here in search of answers to help their kids, you are in the right place! Best to you and your family!

This def is allowed don't worry lknh9! Hope you'll have a great time and meet lots of fellow dysautonomians! (is that actually a word? )

That is so cool!!! Wish I could be there with you Sarah!!! Wishing you loads of fun!

For me, I always take the flu shot. I have been sick with the flu while having POTS and I was really really sick. Also, it took a long time to recover. I need to add that I dont have adverse reactions other than a warm and painful spot which takes about a week to heal. Hope this helps!

I have had the exact same problem, not being able to stay warm, needed to take hot baths and dress warmly before getting to bed. It turned out that mestinon helped me a lot keeping my temp up. Since I'm on octreotide I don't need mestinon but when something is off and I get cold again mestinon is the first thing for me to start again!