jangle Posted June 16, 2012 Report Share Posted June 16, 2012 My internal medicine doctor is thinking about referring me to Dr. Grubb. My insurance said they will cover all tests etc. which honestly I wasn't expecting.Will Dr. Grubb test to see what type of POTS you have? Ex: MCAD, hyperadrenergic, or autoimmune.What type of treatments is he willing to do. I.E. if you do have autoimmune will he try IVIG/Plasmaphoresis. EPO treatments for low blood volume?Etc. etc. basically will Dr. Grubb do everything possible to get you better? Quote Link to comment Share on other sites More sharing options...
Foggy01 Posted June 17, 2012 Report Share Posted June 17, 2012 I am wondering about this too. Someone here recommended him to me but I also wonder how thorough he is in determining types if not the cause itself. Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted June 17, 2012 Report Share Posted June 17, 2012 Jangle I remember reding your post about exercise really helping you, is that not the case anymore? Quote Link to comment Share on other sites More sharing options...
jangle Posted June 17, 2012 Author Report Share Posted June 17, 2012 Right now I'm still feeling better than before I started exercising, but this past May I got hit with just this awful fatigue like feeling and a significant amount of lightheadedness has come back. I've been sleeping a lot during the day but I don't feel rested. Just been feeling pretty awful lately. Quote Link to comment Share on other sites More sharing options...
Alaska Posted June 17, 2012 Report Share Posted June 17, 2012 Sorry to hear that man. Hope this is just a quick relapse? Did anything change for you or did you start doing something different? Of course who really knows, right. I always try to figure out "what did I do different" when I start feeling worse, and it can drive one crazy trying to think about what it COULD have been that you did different (like eating something new). Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted June 17, 2012 Report Share Posted June 17, 2012 I'm sorry to hear that. I was really hopeful you were on your way to recovery. You inspired me Quote Link to comment Share on other sites More sharing options...
Chaos Posted June 17, 2012 Report Share Posted June 17, 2012 Bummer Jangle! Sorry to hear you've had a set back. Was hoping that you were so busy living a normal life that was the reason we didn't see much of you on here for awhile. From your previous posts, it sounded like you hadn't had an issue with fatigue in the past, so I'm really sorry that you're dealing with that aspect of POTS now. For me, the fatigue is one of my worst symptoms so you have my most sincere empathy! Ugh!If I remember right you're in Texas? Have you considered seeing Dr. Goodman at Mayo in Scottsdale? I know he runs the auto-immune panel for POTS and tests for catecholamines (hyper presentation etc). He's aware of the MCAD connection but usually refers you to an allergist at Mayo (Dr Lewis) who may be learning a bit more about it since so many of us have seen him recently. When I was at Cleveland Clinic in 2010, they did the auto immune panel as well I think, but they sent it out to Mayo to run the labs. Not sure what Grubb does as far as that series of tests. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted June 18, 2012 Report Share Posted June 18, 2012 I called and they said its a year wait for grubb so kind of put me off for now.. Quote Link to comment Share on other sites More sharing options...
jangle Posted June 18, 2012 Author Report Share Posted June 18, 2012 I called and they said its a year wait for grubb so kind of put me off for now..Are you serious? A year? That's just depressing. I guess I really am on an island, I'll see about other POTS specialists. Quote Link to comment Share on other sites More sharing options...
roxie Posted June 18, 2012 Report Share Posted June 18, 2012 Yes, it's known to be at least a year. Idk for sure but from what I've heard if he wants testing done he has your local dr do it.There's a few good dr's in Dallas- Dr Suleman and Dr Eichhorn. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 18, 2012 Report Share Posted June 18, 2012 Jangle:So sorry to hear about the setback. I was really hoping that you were doing well. My daughter went to see Dr. Goodman at the Mayo Clinic in Scottsdale. They ran all sorts of tests that she couldn't find a doctor here (in California) to do. I have heard that if you try to get in to the Mayo Clinic in Arizona it is easier to get in during the summer months. You might give them a call. However, we have found that the traveling and follow up was hard for my daughter so we found a neurologist in California that specializes in autonomic disorders. He is also very good (Dr. Jaradeh at Stanford). The wait time to see him was only a few months.Good luck!!! Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted June 19, 2012 Report Share Posted June 19, 2012 I think Vandy and Mayo are the leaders in research, but then again I don't know all the researchers... But I think their clinics have some of the most testing and they have specialist in all fields not just dysautonomia. Grubb has experience and from stories I've heard he has a great instinct and has caught the issues actually causing pots for some people, thats just what I heard. He's a cardiologist after all and so I would think slowing down our fast heart rates is one of his specialties. I wish he was close and less of a wait!!, Quote Link to comment Share on other sites More sharing options...
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