Steph06

I have an appointment with Dr. Grubb (sooo excited) and wanted to know what I should expect. Since I am coming from NJ will he do tests at his office or send me home to get any test done? I just want to be prepared for when I see him. Any helpful information would greatly appreciated. Thanks!

Stephanie

Thank you for the information. Do you know if I would have to stop my meds if I wanted to look into the research studies??

Ok I get you. What treatment options have you tried?

I have tried the IV fluid for a while but did not work. He put me on midodrin but did not work so now I'm on 60mg of Methylphenidate, 40mg of propranolol, 60mg of mestinon, 10mg of lexapro, and 0.1 of florinef. I am also using the support stockings. I went as far as seeing a doctor in Delaware who deals with Neuromusculoskeletal Medicine and Osteo Manipulative Medicine. Not sure if there is much more I can try but I am hoping their is!!

If your current doctor hasnt suggested any treatment protocols or other ideas then seeing a specialist might be the avenue to pursue.

My doctor is Dr. Goodkin is PA and is very good. He told me he is all of options because nothing seems to be working. I was on IV fluids didn't work. I am on a lot of meds and still not working as well as I hoped. He suggest that I see a specialist. (Dr. kauffman in NY or Grubb in OH) They have a 6-9 month waiting list. I found information on vanderbilt and I wanted to know if anyone recommends it.

I need some help. I am trying to get to the root of my problem and need to find a doctor who can help. I had a TTT done and it came back positive but no other test were done. Does anyone suggest vanderbilt and if so what doctor do you recommend? I have been having a really hard time and need some answers. I have a three year old son and my husband is a quadriplegic. My husband is very independent but with me being in a wheelchair pretty much myself doesn't help. I hope someone can help. I look foward to your replies. Thanks!

Hello everyone!! My name is Stephanie. I wanted to introduce myself and tell everyone how much I love this site. It is really helpful

I was diagnosed with POTS about 10 months ago and after finding this site and reading all of your stories I am wondering if I have more than POTS. Along with the typical symptoms of POTS I get really bad tremors(seizure like) in my body (arms, legs, neck, back and hands). My left arm gets numb and my hand turns blue. Sometimes when I'm just sitting around my eyes start to blink really fast and my eyes roll to the back of my head. Also, I get these muscle spasms in my face that I can not control. Does anyone ever get symptoms like this??

The doctor just gave me a heart monitor to wear for 21day and they monitor me for 24 hours a day. I guess that is my first step to find out whats going on. Anyone else have any suggestions?? I am trying to get an appointment with Dr. Grubb but he has a 6-9month waiting list.

Thanks..Stephanie