SpinnyC Posted June 12, 2014 Report Share Posted June 12, 2014 If you've been to Toledo to see the world famous specialist I'd love to hear what you think...I've been around the block with other Pots specialists. It's been years... I've tried Midodrine, Florinef, and Mestinon. All things to raise my BP (which is low when at rest and gets higher when I stand). I'm on a high salt and fluid diet. And do rehab exercise regularly. Over the years my symptoms have gone up and down. I've also been diagnosed with MCAS and EDS.No specialist has ever told me what kind of Pots I have or what they think caused it. I feel like my currant specialist isn't really that involved and disregards a lot of what I say (especially when it comes to medicine side effects). Almost all my doctors have blinders on- never thinking about the big picture. The EDS person never considers Pots, the Pots person never considers EDS or MCAS.I've had tilt tables, qsart, and breathing tests but never had a sweat test or catecholamine testing.I'm hesitant to make the 2 day trip to Toledo because I'm not sure I'll hear anything I haven't heard before. My insurance won't cover the trip, and since I can't work money is a huge consideration.Any advice or experiences would be appreciated. I'm also wondering about the cost of an initial visit. And if tests are needed can I get them done at home? Quote Link to comment Share on other sites More sharing options...
IceLizard Posted June 12, 2014 Report Share Posted June 12, 2014 Where are you located? Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted June 12, 2014 Report Share Posted June 12, 2014 I'm in the same boat on the other end of the country. Pending a trip to a specialist.10hrs there. Nervous. I don't have any answers but just wanted you to know you arent alone Quote Link to comment Share on other sites More sharing options...
SpinnyC Posted June 12, 2014 Author Report Share Posted June 12, 2014 Thanks Bigskyfam Quote Link to comment Share on other sites More sharing options...
IceLizard Posted June 12, 2014 Report Share Posted June 12, 2014 Hi SpinnyC,I asked where you are because I have seen both Dr. Grubb who is about 1000 miles away from me and Dr. Suleman who is only 284 miles away from me.I saw Dr. Grubb nearly 10 years ago. He is a leading researcher in the area of dysautonomia and is very familiar with the possible causes including EDS. He was the doctor who first diagnosed me with JHS/EDS after I had already been diagnosed with POTS. I had already had tilt table and catecholamine testing and he did not order any more tests. He spent a lot of time with me explaining the connection between EDS and dysautonomia. He is very compassionate, will work with the local doctor you have, and his nurse will answer any questions you have via email. He told me to do 20 minutes of aerobic exercise 3X a week, try Cymbalta, and see a counselor (since being disabled by POTS at 19 is distressing). Unfortunately I was in an unstable position at the time and did not have a good primary care doctor to work with. Because of this I was unable to have him continue my care through a local doctor.I saw Dr. Suleman for the first time just last week. He did a complete workup on me including full autonomic testing (17 tests over 4 days in all). He told me that my previous tilt table tests were incomplete. He is very, very precise and thorough. Through his extensive testing we have a much better picture of what is happening with me. He also wants to look for a cause of my POTS to be able to address it directly. However, he does not really want to work through other doctors with continuing treatment. If I am to try a new medication he wants me back in Dallas. He sees more patients with EDS and POTS than anyone else in the south and is very aware of the connection between EDS, POTS, and MCAS. He also did an exercise stress test on me and I scored very poorly. Based on my results his exercise physiologist wrote a very specific exercise regimen for me outlining what I am to do each day. He also wants me to see a nutritionist, be tested for gastroparesis, and work on voluntarily lowering my heart rate and breathing rate by biofeedback training. He says we can also try to add medications later if I need to.A lot has changed in the the realm of EDS, POTS, and MCAS in 10 years, so I can't say what Dr. Grubb is doing now compared to back then. If I had continued to work with him, he may have ordered more testing to get a better picture of what was going on. Both doctors are very knowledgeable about the connections between EDS, POTS, and MCAS and will compassionately listen to your concerns. But, I felt I got more specific information about what was going on with me and what to do about it from my visit with Dr. Suleman. However, given that you are also far away from Dr. Suleman, I would see Dr. Grubb because he will work with your local doctors to continue your care. (At least he did this 10 years ago, you may want to call to make sure.) Quote Link to comment Share on other sites More sharing options...
SpinnyC Posted June 12, 2014 Author Report Share Posted June 12, 2014 Thanks so much for your feedback IceLizard. It's interesting to hear from someone with Pots and EDS. And someone who's been dealing with Pots for quite a number of years as well. It sounds like everything Dr. G did for you are things I've already tried or things I already know (like getting the EDS diagnosis). I've been working with a exercise physiologist for a few years and that helped a lot. Dallas would be way too far for me (especially if the Dr. doesn't want to work with locals for followups) but I like how precise and thorough your appointment sounded.I just really don't want to go all the way to Toledo, spend money I don't really have to spend, and get my hopes up- only hear things I've already heard or tried. I'm not expecting a miracle cure... but any advancement I could make would be worth it. Having a doctor that would consider the big picture and is knowledgable would be fantastic. Right now I feel like the only doctors who care about the big picture know as much or less than I do and sometimes I'm educating them.More than anything i just don't want to go there and be disappointed. And to know that just because I've seen other Pots specialists doesn't mean there's nothing left to gain. Quote Link to comment Share on other sites More sharing options...
IceLizard Posted June 12, 2014 Report Share Posted June 12, 2014 You're welcome . To get the most out of your appointment I would send your most relevant test results and medical records regarding POTS, EDS, and MCAS to Dr. Grubb so that he can know where to begin with you. You may also want to include a letter saying what medications or other things you have tried and that you want to make progress but your current doctors are not sure what to do next. At the time that I had met him I was newly diagnosed and did not have the years of trying things out that you have.I do know that he will to the best of his ability try to find a way to help you improve. He cares very much about his patients and their well-being. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 15, 2014 Report Share Posted June 15, 2014 Spin,If you give the other members the general part of the country you are from, you will get more suggestions on who to see. Have you tried searching the dinet physicians list to see if there is someone closer to you?I think there is an eds doc near chicago, dr. Tinks that has been mentioned in the forums, another dysautonomia doc in that area is Dr. Barboi.I saw Dr. Grubb too and had a similar experience. It takes a long time to get in with him.What were the results of your qsart, cat and sweat testing? If those were positive that can point to a small fiber neuropathy and that often can be autoimmune in nature. Vandebilt is also looking into autoimmune causes now as well. They also have a research program you may qualify for.It is odd that your pots and eds docs aren't relating to each other. It is very common that EDS's patients have a dysautonomia due to the floppy nature of their veins, thus the EDS is causing the autonomic symptoms. Quote Link to comment Share on other sites More sharing options...
DeGenesis Posted June 15, 2014 Report Share Posted June 15, 2014 Who is a good specialist in or near NY state or Michigan, or in that general area of the country? I live in Ontario and all ways to the US lead through NY state or Michigan.Sorry I don't mean to derail your thread, but I agree with some other posters that you shouldn't put your eggs all in one basket. If you go traveling, try and see more than one specialist. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 15, 2014 Report Share Posted June 15, 2014 dg,There are some canadian physicians have you looked into any of them. Canada may have more flexibility in getting treatment options covered then in the USA. There have been several members that were treated for aag up there. Quote Link to comment Share on other sites More sharing options...
sarahm Posted June 17, 2014 Report Share Posted June 17, 2014 I have started seeing Dr. Grubb. There is a local POTS specialist where I live, but he had run out of ideas and I wasn't ready to give up. Dr. Grubb is very knowledgable and up to date on all the latest research. And very willing to experiment, my previous doctor was very timid about new treatments. I have tried several new drugs with him, some help some don't. It is really hard to get a hold of anyone in their office between appointments. I'm glad I started seeing him, but it's not without its headaches. As far as cost and testing, you can call and ask about your specific case. But I needed to get special permission from my insurance company and doctor to cover costs. He has never ordered any tests because I've had an extensive work up, but I did ask about that before my first appointment. They prefer you do them at home if possible. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 17, 2014 Report Share Posted June 17, 2014 This was my experience with Dr. Grubb too! It was very helpful though and sent information to my local doctor. Quote Link to comment Share on other sites More sharing options...
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