What Can I Expect At A New Patient Appt With Dr. Grubb?

[Chrissy]

Hi everyone. After 8 1/2 years of progression with Dysautonomia and POTS my case has been classified complicated by every doctor I've seen since 2009. This has led to doctor's dropping the ball in my treatment, referrals to new doctors for new symptoms being turned down and/or ignored, and my medical team becoming concerned about further testing, unnecessary new doctors, new meds, and pretty much making any further moves toward recovery. My symptoms tend to escalate or new symptoms arise the more doctors try to fix the current symptoms. So it was decided that I should go to a research hospital or go see Dr. Grubb. My name will come up on the 1 year waiting list to see Dr. Grubb sometime in early 2014. I was wondering how long I can expect to be there and generally what to expect.

Part of the complexity of my case is unresolved Cushings disease, autoimmune/hypermobile joints (suspected Lupus, but my doctor couldn't get the referral to a rheumatologist to go through), sensory overload causing seizures, and my cardio symptoms swinging from one extreme to another and the meds not working. There is a unexplained pressure at the base of my skull that no one has been able to figure out. Then this morning my cardiologist called with the results of a 4 hour glucose test and said I was hypoglycemic and need to eat a protein bar every hour and carry glucose tablets. I feel like I'm in medical limbo.

I'm confident that Dr. Grubb will be able to get my treatment back on track. I was just wondering what to expect when I go. Is it going to be a quick up and back trip or can I expect to be there awhile to have tests run?

Thanks for any input.

Chrissy

[Becia]

I have no words of wisdom, but I am too on the waiting list for Dr Grubbs, and in the same boat in treatments. I look forward to hearing how it goes when you see him, and anyone else's thoughts.

[katrina13]

Hi, Gemma--

I went to see him last spring. He was very nice, and very knowledgable. I can tell you about my experience, though I imagine it's different for everyone.

I'm glad I went, but it was a kind of strange experience (I like to look at it as an adventure in medicine! ) I was diagnosed at Vanderbilt 12 years ago, and I went to Dr. Grubb last May because I hadn't seen a specialist since 2001, and I'd moved to the Toledo area for work. I was on the wait list for 18 months.

First of all, I should tell you that I nearly put together a whole afghan during the wait time, so make sure you bring something to do! There's waiting when you get there, waiting when you're given a room, and for me there was also waiting as the doctor split his time with another patient. So glad I brought my crochet.

Second, Dr. Grubb didn't do any lab work (I've heard that he typically doesn't?). He did give me a powerpoint lecture that involved art history, though, which was sort of neat. He also checked my flexibility and said I had joint hypermobility syndrome as an underlying cause of my POTS. He talked with me about treatment options and printed out some information about cooling vests, and then I went home. I'm supposed to see his nurse next week for follow-up.

I hope your visit goes well, and that you get the answers you need--

Best,

Katrina

[HyperPOTS8]

Firstly, the reason the wait is so long is because he only sees five new patients per month (his staff told me that). I also went last May and only waited 8 months.