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Mayo...should I Go???


julie f

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It makes me nervous just posting this. The thought of going to Mayo is actually making me sweat as I type this. Wow!

Here's the scoop. I was diagnosed with POTS in May of 08. Then, by Sept. they added Sjogrens and Raynauds. There is also some buzz about MS. We have been managing my symptoms with a variety of meds but because of my med intolerance, I am down to just Metoprolol twice a day. I have my bad days and then I have my really bad days just like all of you.

My dilemma is this. My primary dr and the cardio have suggested that I go to Mayo. They still think there could be something else causing this. I have had an MRI which I thought ruled out the MS. My primary says that's not necessarily so. A lumbar puncture would be definitive. The sensible me says, "Go, and get this ruled out." The scaredy cat in me says, "Are you kidding me?" I have been through the gammet of tests including TTT, sweat tests, ekg's, echo's,...I can't even remember them all. (Gotta love brain fog or selective memory). I am freaked out about the lumbar puncture, and I don't want to do this.

My family is very supportive, and several are ready to take me there as soon as I pack my bags. My co-workers tell me to get going so that I know what I'm dealing with. I just can't get past the fear. (By the way, I'm still sweating.) I also don't want to go through the same tests I've already had. I feel like what else are they going to tell me. I don't want to try any more meds because most times, they make things worse than they were. I just don't know if Ican make that sensible side win out.

Thanks so much for allowing me to vent this.

(Yup, still sweating, I guess the sjogrens hasn't depleated my sweat glands yet.) LOL

Julie

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Hi Julie,

I don't know what Mayo you are going to, I am assuming it is the rochester one. I went to the one in AZ. It turned out to be a really good experience. They were the first people who didn't push me to do testing that might make things worse, and didn't prescribe me drugs, because I told them what a hard time I had with the drugs. I am scheduled for a EGD on Monday, and it is without sedation. It was actually my sensitivites to drugs that led the doctor to suspect the dysautonomia. (I think because she said something about it) If you are nervous you can always go, and see what they say. You have a right to refuse any test, and any medication. From my experience it was very positive. I hope this helps you.

Suzy

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Hi Julie,

I was diagnosed out at Mayo in Rochester and had a pretty good expirience. I also had a spinal tap done when I was in the hospital when I was 17 when we were still trying to figure out why I was sick. For me the actual spinal tap itself wasnt so bad. The spinal headache afterwards though, that was pretty bad. I dont want to scare you. Looking back though, I'm glad I had it done because it ruled out a lot of things. I hope this helps in some way, and that you are able to decide what to do.

Candace

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Guest tearose

Dear one,

If you want answers then go. I, like others have seen hundreds of doctors over the years. I have never ever been so peaceful, confident and reassured as I have been in the three visits I took to Mayo, MN. Yes, some of the tests were horrific. Yes, there are times I cried. I also had the best testing, the best care and the best brains in the world trying to help me! In the end, the whole trip and diagnosis and treatment plan wound up increasing and improving my quality of life. It is the best gift you will ever give yourself. There has been one lemon of a doctor for every twenty at Mayo as compared to three lemons to one gem locally...if you know what I mean. In the rare chance you get a doctor at Mayo that isn't understanding you then speak up and get a different one.

I have had spinal tap(S) and the headache only came when I did NOT lay flat for several hours afterwards. Just do not get up! Ask for a bed pan when you need to pee and stay horizontal for at least 8 hours!!!

Let us know what you decide. Trust your instincts. Are you ready for the answers? We are here for you.

best regards,

tearose

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Not to be a downer, but I had a less-than-great experience at Mayo in 2003, and was given an anxiety diagnosis, along with chronic back pain. this was before all the eds and ans stuff really emerged, but in retrospect the signs were all there. there are some very good folks there, but I have to admit, it makes me reluctant to return. (One of my issues was intermittent numbness in my face and arm, and blurry vision that would come and go. i have since been diagnosed with migraines, but because the initiial symptoms did not involve pain, they tried to convince me it was psychosomatic...and it bothers me that that is in my records, if I ever did return. My symptoms now seem glaringly obvious--like how could they have missed that? Woman in mid-thrituies with transient neuro symptoms affecting eyes, arm, and peri-oral region, intermittent vertigo, but clean scans... now that i get pain with them, i have the right diagnosis.)

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If I do go, it would be to Rochester, and I will either wait until spring break or until the summer. I have school aged children who both have some anxiety issues. I don't want them to worry about me any more than they already do. I am told that I should get it scheduled now though. Ugh.

I did have back surgery when I was 19. Twenty years later, I still remember some of the procedures I had done back then. I think that is also adding to my hesitancy.

Thank you for all of your input. I am not sure when I will make up my mind. My sister laughs at me because she knows that I always take a long time to weigh an issue and finally make a decision.

Julie

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Mayo is worthwhile, but hard to get into. When I went in 2004, Dr. Low told me they have to turn away 80% of the applicants. If you do get in, there is also a wait of a couple of months to get an appointment. I would go ahead and submit a thorough application and see what happens. In the meanwhile, you may also want to look for a POTS specialist in your area. Mayo is great for evaulation, but you really need a knoweldgeable local dr for ongoing care. I don't know whether your drs treat a lot of POTS patients, but people who don't specialize in dysautomia don't always know all of the symptoms and suggest there is "something else" going on. There is a list of POTS specialists on the DINET main page. Good luck.

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Too bad I didn't know that I had various syndromes when I went there. My note was just to say that Mayo has amazing resources, and great doctors for specific issues. But for me, just because it was Mayo, didn't mean they were able to figure out-- and I then got the copout diagnosis we so frequently get when doctors don't know what's going on...even at Mayo.

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I had a really bad experience at Mayo in the summer of 2002. My advice: make sure that you go to the Autonomic Lab. Accept no substitutes. They diverted me from the Autonomic Lab, gave me a once over lightly, and pronounced me nuts. Then I went to Mt. Sinai in New York City, where they put me on a tilt table and said that I had florid POTS. Go figure.

If your doctor wants you to go to a tertiary referral center, make sure that he or she can talk to an intelligent life form over there before you make your appointment.

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I went to Mayo myself this past November the week before Thanksgiving, Mayo is a well oiled machine. They know there stuff. I was diagnosed with POTS and I went there for a confirmation of my diagnosis. I will be honest it will not be a fun time, make sure someone goes with you. You will need an extra pair of eyes and ears, plus to help you. Some of the tests really take it out of you. But believe me it is worth it, they will put you through your paces but you will know by the time you leave what is wrong with you. And believe me it is easier to live with feeling crappy when you know what is wrong. I hope this helps you, but I definitely encourage you to go. God Bless you, Pat

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I am being pretty whimpy about this. Today I feel pretty good, and I think why bother going. Things are going well. Tomorrow I will feel crummy and still not want to go. At this point I don't even think its about Mayo. Its just a matter of having more testing. I shouldn't complain because I have had many fewer tests than most.

I am just sick of dealing with this. I know I have to learn to cope, but it is always on my mind. Eventually I'll make up my mind. ;)

Happy Valentine's Day to all,

Julie

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