Ernie Posted January 16, 2009 Report Share Posted January 16, 2009 Hi,I am getting closer to my visit to Mayo. I would like to know besides the TTT, the catecholamines and the sweat test, do you have any test that I should do at Mayo? I want to pay for tests that are worth my while.Thanks Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 17, 2009 Report Share Posted January 17, 2009 Hi,What other tests have you had done? Especially those done more recently? Quote Link to comment Share on other sites More sharing options...
Tammy Posted January 17, 2009 Report Share Posted January 17, 2009 Hi Ernie, I noticed that you also have hypoglycemia and not sure if you take Metaformin (sp?) for it, but you might want to be re-tested for this and have them check your insulin levels along with glucose levels at each interval. Tammy Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 17, 2009 Author Report Share Posted January 17, 2009 Hi,I did stress test, echocardiogram, sleep studies, many blood tests, colonoscopy, allergy test, blood volume. Quote Link to comment Share on other sites More sharing options...
dawn Posted January 17, 2009 Report Share Posted January 17, 2009 I have been to Mayo twice and both times the three tests you mentioned were the ones that I had.The second time I also did a 24 hour urine for sodium.I also had the epinephrine and norepinephrine levels while laying and standing.I hope that they can help you.Dawn Quote Link to comment Share on other sites More sharing options...
momdi Posted January 17, 2009 Report Share Posted January 17, 2009 Sorry Ernie, I meant to respond to this question as well in my last post.IMO, Low is very good at selecting the appropriate tests. He didn't just throw a bunch of tests at us - every one seemed to have a clear purpose - and as a retired RN, I'm generally pretty critical of doctors' approach to diagnostics. To make me happy in this regard is saying a lot. Again, that's why you need to be very sure that the history that the fellow takes is as clear and accurate as can be.Mike had the norepinephrine blood test, 24 hour urine for volume and sodium, a tilt table test, and the sweat tests - aka "shake and bake".I think the tests will depend on your specific issues.Again, if you have any specific questions, you can pm me.Dianne Quote Link to comment Share on other sites More sharing options...
HoldOnToHope Posted January 18, 2009 Report Share Posted January 18, 2009 What POTS doctors do you see at MAYO? My daughter has seen a pediatrician, but is going to have to move to an adult doc at some point. Thanks! Quote Link to comment Share on other sites More sharing options...
jjpots Posted January 18, 2009 Report Share Posted January 18, 2009 I see Dr. Low at the Mayo.Jen Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 18, 2009 Author Report Share Posted January 18, 2009 Hi,I think there is only the sweat test that I did not do if I conclude from everyone's comments. I did not realiase that I did more tests than most of the members.I am going to Mayo to find more about my etiology. Since my family does not want to be a lab rat anymore I have to find other means of improving my health. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 19, 2009 Report Share Posted January 19, 2009 Why not order a few extras?:MIBG of the heart to measure NE reuptake?Ultrasound of the carotid arteries during tilt to establish the amount of blood flow reduction to the brain?Some of the tests used by Dr.J.Stewart? Quote Link to comment Share on other sites More sharing options...
morgan617 Posted January 19, 2009 Report Share Posted January 19, 2009 Ernie, sorry I haven't been around. I can't help you with tests, as you know I get rejected from everywhere and don't have the money for out of pocket anywhere else. I just wanted to wish you luck. morgan Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 19, 2009 Author Report Share Posted January 19, 2009 Hi Ramakentesh, I tried to find the tests Dr Julian Stewart does but I only found his curriculum. Would you have any links to suggest?Thanks for your suggestions.If any of you have other suggestions I will welcome them.Hi Morgan,I am sorry you are not accepted at the big centers. I only get accepted with the top notch syncope specialists because I am the worst adrenaline case in the world. The doctors don't even understand why I am still alive because rats die a 20 x the EPI and I have 100x. They can't test humans of course because they are not allowed to kill people! So I am the benchmark for all the other hyperadrernergic cases in the world. I would much rather be healthy than travel to different hospitals to get medical help. I feel I have a great responsibility to help my peers and this is my way to help them, by pushing doctors to the edge of their knowledge and further.As for the fees a Dear Friend is helping me and I am borrowing the other part of the money. I really want to go because my gut feeling tells me that Dr Low will be able to help. I don't know what he will give me but I believe in him.Love to all Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 20, 2009 Report Share Posted January 20, 2009 Heyhere are the tests used by Dr.J Stewart - they are pretty comprehensive and the ones he does on local blood flow look at the calf somehow:http://www.nymc.edu/fhp/centers/syncope/ci...easurements.htmhave you ever had your NE reuptake measured with an MIBG scan? Is it the NET gene they think is causing your situation? Quote Link to comment Share on other sites More sharing options...
ana_22 Posted January 20, 2009 Report Share Posted January 20, 2009 hi ernie, i dont have any suggestions, but i wanted to with you the best for your trip and hospital stay. i hope it brings you many answers, that will help you and the POTS/DYSAUTONOMIA community!ana xxx Quote Link to comment Share on other sites More sharing options...
goldicedance Posted January 22, 2009 Report Share Posted January 22, 2009 Good luck at Mayo. I am not sure what the sweat test will tell you. When I have had it done at Mayo, Dr. Low said it was another indication of dysautonomia. You might want to speak with his nurse before you go so that you might have an idea of the tests he is proposing as well as the costs. I think he has it pretty much planned beforehand. If there is a test you would want and it is not on his protocol of tests, you also might want to mention it to his nurse. Besides the cost of the tests, an unknown is the amount of time that you have allotted to your stay in Rochester. For example, the last time I was there, he realized he forgot to schedule an appointment with a cardiologist. If I wanted to see the cardio, I would have had to stay around in Rochester for another week or so. Besides the extra costs of lodging, it would have been costly to change airline tickets. These are the thoughts I had. BTW, have you already tried Mestinon? This is one of his "big guns." Also, I gather from the cardio I see at Mayo Jacksonville that procrit seems to be added to the cocktails they are trying.Also as to sweat test and tilt table, did you have the tilt table where they measure sweat responses as well as do the valsalva (spelling) where you blow into a balloon. The Mayo neurology tilt table is done for only a few minutes whereas if you have had the cardiologist version of the Tilt table it lasts much longer.I found the sweat test (the one someone referred to as the "shake and bake" the worst of the lost. At first, when I was put into the box, I thought to myself this feels good; I can handle it--like being on a Caribbean beach (pretty good diversion from Canadian winters as well as the Rochester winter). After a few minutes, I felt horrible. They heat you up until you reach a certain temperature. I also found it a little embarassing that they were videotaping you the whole time.I hope that you have gotten a room in the hotel connected to the Mayo..the Kahler--there you can get a studio with a kitchenette at Mayo prices. The Kahler is perfect since it is connected underground to the Mayo. That way you can escape the brutal winter as well as easily return to your hotel room during breaks. It is also handy having that kitchenette.Hope you get some more results from the Mayo.Lois Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 22, 2009 Author Report Share Posted January 22, 2009 Hi Lois,How much is the Kahler at Mayo price? I checked on the internet and the cheapest I have found is 79$ per night for a room. Do they give a reduction when we mention we are going to Mayo?I am kind of afraid of doing the sweat test because heat triggers my syncopes. I wonder if they are going to realise that I am unconscious in the oven and take me out of there or if they are going to leave me there until the time is done?I am already comfirmed with the diagnosis I want to have a better medical treatment. If the sweat test is just to confirm the diagnosis I don't think it is worth my while doing it but if it can help them give me different meds that are more suited for my needs then I will do it.I believe that when I did my TTT at NIH they measured the sweat and I did the Valsalva. I don't want to pay for a TTT at Mayo as it is 5,000$.Maybe I will ask about the EDS testing because I have joint pain. I would like to have a video endoscopy but it cost 2,400$ so I will wait for that one. It's kind of difficult for me to know what test to ask for because I don't know what is available. It's not as if I am starting from scratch.Thanks for your help. Quote Link to comment Share on other sites More sharing options...
flop Posted January 23, 2009 Report Share Posted January 23, 2009 Ernie,do you have copies of all your previous tests? I would either take them with you or have them sent in advance so that the doctor can look through them all. It sounds to me what you need is the doctor's experience and opinion rather than repeating a whole load of tests that you have already had.I know someone (with a totally different medical condition) who travelled from the UK to Mayo but had had most of the tests done first (in the UK on our NHS) so he mostly had appointments with different doctors rather than tests done in the US.Flop Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 23, 2009 Author Report Share Posted January 23, 2009 Hi Flop,Yes I have copies of most of my tests. That's an excellent idea to have an appointment with different specialists. I will bring my files with me. Thanks Quote Link to comment Share on other sites More sharing options...
lorrie Posted January 23, 2009 Report Share Posted January 23, 2009 Ernie,When do you go to Mayo? I am going in March and they sent me a packet with tons of info. including a detailed schedule of tests I will be having. The schedule is hour by hour with details of where to report to and what time each test or doctor consult will happen. They sent instructions as to what to bring with me as well. The letter they sent with the packet said I am going through their "POTS Clinic". I am scheduled to be seen by Dr. Low as well as other doctors and have been assigned a nurse practitioner who will follow my case all the way through the process. They gave me her name and a way to contact them to get messages to her beforehand in case I think of something I want to know or something they should be aware of.I got a hotel for $79 a night a few blocks from the clinic with free shuttle to the clinic and microwave, fridge, coffee pot, etc. in the room. Also an indoor heated pool...that will be great for after a long day of testing. They also have free hot bar breakfast. That will save me some money on food. I am scheduled to be there for testing for 5 days. I am hopeful that Mayo is going to be what we are both looking for. Best wishes to you. Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 23, 2009 Author Report Share Posted January 23, 2009 Hi Lolo,I am scheduled for Febuary 10th with Dr Low. I have no schedule and no information in my envelop. The only thing I know was said on the phone. The secretary told me that I was scheduled for a nerve conduction test, sweat test and autonomic reflex screaning. Those 3 tests costs 3,000$.There are only 2 sheets, that's all!Would you mind telling me which hotel you were given and the phone number. If you prefer you can PM me.They also ask me to put 5,000$ up front. It's like we are going to two different places. Quote Link to comment Share on other sites More sharing options...
goldicedance Posted January 23, 2009 Report Share Posted January 23, 2009 Ernie,I haven't been to Rochester for a few years. I now go to Mayo Jax.Weather can be just freezing in Rochester in February. I don't know how much the Kahler costs. However, it's convenience can't be beat. I would get exhausted having to navigate a shuttle van to the Clinic each day. Then, factor in the wind chil factor, it becomes much worse. In for a nickle, in for a dime. In the whole scheme of things, the extra for the hotel doesn't mean that more when you factor in the chill. The ease in getting back and forth underground (albeit in a wheelchair, perhaps) is well worth it.I would still talk with Dr. Low's nurse or have your doctor in Canada talk to her or one of the other POTS doctors.I found that they have a harder time "squeezing you in for unscheduled appointments" then you would otherwise think. How long do you plan to be in Rochester?Email me if you think I can offer additional insights.Lois Quote Link to comment Share on other sites More sharing options...
lorrie Posted January 23, 2009 Report Share Posted January 23, 2009 I don't mind but my info. is at my parent's house at the moment. I found the hotel by going on the Mayo website and clicking on lodging. Have you been on that site? It has some good information. I think the name of the hotel is LaQuinta Inn...that sounds right.Maybe the difference in the information they sent you and what they sent me is that I am going through the entire POTS clinic workup and you are just wanting some advice from Dr. Low. Also, the fact that you are private pay may make a difference. I have good insurance and thankfully only have to worry about copays, lodging, and eating.I filed my income taxes early so I can use that money for the trip. I'm not familiar with the way your health care system works...could be that that also makes a difference in what they schedule for you.If you don't find anything on the Mayo site, let me know and I will get that phone number for you. Best of luck!!!! Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 24, 2009 Author Report Share Posted January 24, 2009 Hi,Thanks for your continued help. I just booked my plane ticket. I will be leaving in 2 weeks. I am very eager about it.Lolo: I asked the secretary why I have no test ordered yet and he told me that it's because I am Dr Low's personal patient and not in the POTS Clinic. So he has to see me first and decide what he is going to do with me. I have my appointment with him at 7:30 a.m.. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 24, 2009 Report Share Posted January 24, 2009 Good wishes Ernie!I stayed at the Kahler because it is attached and I went in February because it is cheapest rates then. The Kahler has a Mayo Clinic rate.It is well worth the added cost because you will see, you will probably be there at least one week and maybe longer! I have to say that one of the most important tests I had done was the thermoregulatory sweat test. It was horrific for a bit BUT well worth it because it showed that I didn't sweat regularly on my legs. Do not worry!! You will be in very professional, competent hands there. Just tell them how you are doing and they will help you get through it. It is very different from the QSART sweat test. The next most important is the blood test drawn once after laying down, once when sitting up and once when standing. The tilt table is of course important. I am sure Dr. Low will go over all this with you. My Neurologist is Dr. Fealy, he is excellent. Actually, in reflecting on the whole journey, Mayo is excellent for diagnosis. You can't rush it though. They all put their heads together will and help you. If you do a search, I have written up all about my Mayo visits. Take the time to post your news as things happen and let me know if I can be of any further help.take care,tearose Quote Link to comment Share on other sites More sharing options...
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