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"mayo Or Bust" Today!


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We are leaving shortly for the drive to Jacksonville, Florida to get me to Mayo. I feel like I need to write that on our car(not literally, but figuratively). I am on a mission with this endo and that is to get my blood sugar fixed. Also, I'm hoping the doctor will enlighten me on if and how the glucose issues may be having an influence on my POTS. Also, I'll have the ADH question addressed for good, whether it is a real issue or not. If you send out good wishes and thoughts, send them to the DOCTOR ---- he's going to need them! :)

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Hope that your journey is the first step towards your recovery. Hoping for sensible and do-able answers for you. Tell them to give you a PURPLE bandaid - purple is supposed to make a person heal faster. (It's pretty to look at anyway.) WELL WISHES for you!

Issie

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Good luck! Who will you be seeing? I hope you will be seeing Dr. K....in cardiology. He is extremely knowledgeable and caring, very interested in POTS, and has an extremely knowledgeable nurse practiioner. I found him way more helpful than the Neurology Department. There is another doc in rheumatology who knows quite a bit about POTS as well.

There are some excellent endos as well.

Let us know how everything goes. We're hoping you get the answers that will help you!

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Thanks for all the positive wishes!

I had my appt. and am feeling a little, I don't know, kind of neutral. I guess I had too big of an expectation being that it was MAYO, afterall. The doctor spent almost an hour with me and asked questions related to the whole story I had sent him prior to my appt. Then, he steered off in the direction of probably not much to do for my hypoglycemia except eat often, blah, blah, blah. I say, "but where is that line between having "normal" hypoglycemia in response to food and a not normal response?". Also, "why are other people out in the world having "reactive hypos", yet still can function with a normal life while I spend everyday eating, preventing lows, fixing lows, and having very symptomatic days?". He didn't really have any good answers. But, I will have a mixed-meal test to see how my glucose/insulin reacts.

He seemed to be more interested in my POTS, believe it or not. He asked more questions about that, and even once stated that he really thought my glucose reactions could be related to the autonomic issues related to POTS. That could be a possibility, but I have had the hypoglycemia for a whole 14 years before POTS, so not sure on that one. He is trying to get me in with a neurologist to check into the POTS(I was not expecting that at all). He wanted me to see a cardiologist, but I politely refused, letting him know that my heart has been thoroughly tested and nothing offered has helped me(alpha/beta blockers).

So, I am getting a boat-load of the usual endocrine tests: aldosterone, thyroid, catecholamines, glucose/insulin, etc. So, I will sit around and wait for them to get insurance approval for the mixed meal test and the neuro appt. Anyone ever have to sit for Mayo to set all that up--how long did you have to wait?

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You should check in with scheduling - should have had that done today. Usually, they start testing immediately. You go from one appt. to the next and one lab test to the next. They should have told you to go to scheduling and when the orders are immediately entered in by the doc you saw - they schedule it. Go or call first thing in the morning - I bet you will have appts. already scheduled. You might be there when they open so you don't miss one. Be sure and check your cell phone because they will call and leave messeages as to the appts. too. Hope you get some answers.

Issie

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Thanks, Issie. I do have the labs set up for in the morning, but they said they would call when the insurance gives approval for the rest. I had called my insurance before I left home to ask how it works when traveling to Mayo out-of-state, knowing that they will probably want to order tests, imaging or procedures. The insurance said that it was not complicated, that things could be approved immediately in "most" cases. So, I am hoping that I get that call tomorrow from Mayo to go begin all this stuff. The scheduler at Mayo said it could take up to a week to get things approved, so was not to keen on sitting around for a week doing nothing.

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Take him up on the offer to see a cardio...Dr. Kusumoto is great on POTS!!!! There are a couple of others, I understand, with a real interest in POTS. I would put my $$$$ on DR. K rather than on the neuro they will probably refer you to. You probably know as much about POTS as the neuro. He knows alot but is not very creative. He seems to listen to what you are saying. But adds not much to the mix.

Dr. Kusumoto is a cardio with a genuine interest in POTS. He reminds me a lot of Dr. Grubb. I would definitely ask for Dr. Kusumoto. His nurse practiioner is also super. Dr. Kusumoto is worth the wait. He sees alot of POTS patients.

There is a general cardiologist who specializes in women's cardio issues who is excellent as well. Dr. Landolfo.

Feel free to email me.

I live about 60 miles from JAX so I am quite familiar with the Mayo and their horde of doctors. They do like to order tests, for sure.

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Thanks, Issie. I do have the labs set up for in the morning, but they said they would call when the insurance gives approval for the rest. I had called my insurance before I left home to ask how it works when traveling to Mayo out-of-state, knowing that they will probably want to order tests, imaging or procedures. The insurance said that it was not complicated, that things could be approved immediately in "most" cases. So, I am hoping that I get that call tomorrow from Mayo to go begin all this stuff. The scheduler at Mayo said it could take up to a week to get things approved, so was not to keen on sitting around for a week doing nothing.

Oh, I hope you change your mind if the cardiologist was Dr. K!!

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As high as we get our hopes and as weary as we get from seeing specialists and expectations dashed, since driving all that way, I'd fit cardiologist in, too. (I'm biased about neuro simply because of my experiences). You'd mentioned your hypoglycemia being well before POTS dx, but could this still be dysautonomia manifest in a not so common way? (i.e. how many of us had motion sickness or couldn't ride certain rides at fairs/amusement parks as kids, but never related it to our ANS). I hope you get some answers.(After I had pituitary tumor removed, when endocrinologist was testing functioning of the system, he'd mentioned that he 'should do' an insulin challenge test in an upcoming visit--why I did not know. But whenever I went back, he said I didn't need to have the test. I never understood why I needed it one visit and then an about face. That was in early 1980s--maybe his office wasn't equipped or maybe it was challenging to get ins to approve or maybe he felt it would be long day at a hospital--in city for me, or maybe you couldn't have it done unless you were an inpatient back in those days. Have no clue.). I have had a fatty pancreas (and fatty cysts on my liver) since I don't know how long--it was 'incidental' finding on a CT done as far back as 2004. My fasting BSs are good (knocking wood as lot of diabetes in family--DMs last BS was high--but doc told her to 'watch her sugar intake' but didn't check fasting BS--I told her to fast for her next doc appt and when they checked her coumadin level to ask them to check the fasting--but she did neither. DGM was 'borderline diabetic' back in the day--which would be diabetic in this era, DGF was found to be diabetic on autopsy--sudden death at 64. DGGM was insulin dependent diabetic. DN has juevenile diabetes). Nobody can tell me why my pancreas is fatty or if that is source (or IBD) with my malabsorption. Gets really frustrating when I do all the things they tell me on my part, yet things stay the same.

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