mevans4 Posted October 6, 2005 Report Share Posted October 6, 2005 can someone please help. My neice have been told she has POTS, we live in toronto and no doctor up here has been able to help her. In the summer of 05 she went down to the mayo clinic in cleavland and was given the appropriate tests to determine what she had and it has come back that she has pots. But again no doctor has been able to decifer what this is or how to possibly treat it. We are at our wits end here and every day she is getting worse & worse, very sick girl. She is only 25 and it's really hard for me to see this happening, I feel that I need to do something. I have found in the past that these kind of web sites, forums are so useful and great people with so much information and kindness are willing to help out others.Can someone please explain to me what this condition is all about in plain terms and maybe share some suggestions or stories of help for us.I really appreciate your kindness.Maureen Evans Quote Link to comment Share on other sites More sharing options...
SunsetParadise49 Posted October 6, 2005 Report Share Posted October 6, 2005 Hi! I just want to let you know that I sent you an email!!! So check it out and I'll be anxious to get a reply from you soon! Gwendolyn Quote Link to comment Share on other sites More sharing options...
corina Posted October 6, 2005 Report Share Posted October 6, 2005 Hi,when you open the general discussion there is an upper part and lower part. In the upper part there is a pinned topic called: help yourself to answers to common questions. That might help. Also, when you open the site there is a lot of information on what POTS is and how it can be treated etc. Best wishes for your niece!Corina Quote Link to comment Share on other sites More sharing options...
briarrose Posted October 6, 2005 Report Share Posted October 6, 2005 Welcome here!I'm sorry to here that your niece has POTS but look at the bright side she has a diagnosis. There are several good websites that explains POTS & Dysautonomia. The symptoms are different for everyone and so is the treatment plan. I'll attach some weblinks and am more than happy to answer any questions you might have.There is also a really good file of information at the top of this forum page under the pinned area that has many of these websites already linked.www.potsplace.comhttp://home.att.net/~potsweb/POTS.htmlhttp://www.ndrf.org/ Quote Link to comment Share on other sites More sharing options...
Eillyre Posted October 6, 2005 Report Share Posted October 6, 2005 I'll be sending you a PM soon! Glad you found us! Hang in there!Angela Quote Link to comment Share on other sites More sharing options...
HoldOnToHope Posted October 6, 2005 Report Share Posted October 6, 2005 Hi Maureen,As you can see, your niece is not alone. You've found a wonderful place for information and support. My daughter went from being a cross country runner to a couch-bound kid within weeks. A variety of medications have really helped her, but it takes a while to get it all figured out. You're a wonderful aunt to be gathering information for your niece. I wish you my best!! Quote Link to comment Share on other sites More sharing options...
biatecki Posted October 6, 2005 Report Share Posted October 6, 2005 Hi Please have your niece contact Dr Schondorf in Montreal. He is the best we have in Canada. You will find details of how to contact him on this site. If your niece would like help or support I would be only too happy to talk to her either by email or phone. Just let me know.Margaret Quote Link to comment Share on other sites More sharing options...
Sunfish Posted October 6, 2005 Report Share Posted October 6, 2005 maureen - welcome! i'm sorry you have reason to be here but glad that you found the forum. your neice is very lucky to have your support. there is a lot of great info on the site as others have already mentioned. some of the direct links are:http://www.dinet.org/ (the main page where there are numerous links along the left side re: explanations of the condition, treatments, etc)http://dinet.ipbhost.com/index.php?showtopic=1954 (the help yourself links that someone else mentioned, posted at the top of the forum page)in addition, reading various topics in the forum can be a great help. you can always search for certain topics using the search feature in the upper right hand side of the screen.i'm so sorry that your neice is having such a rough time. i too am 25 and while i was diagnosed years ago this past year has been the most difficult for me as my health declined a lot so i can definitely relate.in terms of treatment, it's unfortunately not unusual to have such a rough time finding a doc who understands (even a little) or is confident trying different treatments. many of us have travelled near and far to find help, but one of the most helpful things can be to find a local primary care doc who may not be an expert but is willing to learn. i know that this is MUCH easier said than done though, as i just recently moved and am struggling to find one myself.hang in there, melissap.s. feel free to email/PM me if you have any questions & feel more comfortable doing so, or pass my info on to your neice for the same Quote Link to comment Share on other sites More sharing options...
faithinspires Posted October 6, 2005 Report Share Posted October 6, 2005 Hi Maureen, Welcome to the group! I am glad you found it! Do check out the websites that others have mentioned. This group and these websites are very informative and supportive. I am sorry to hear about your neice. I know how overwhelming the news was to me regarding my daughter's and then my diagnosis. http://www.dynakids.org/index.jsphere is another related website Quote Link to comment Share on other sites More sharing options...
Evie Posted October 7, 2005 Report Share Posted October 7, 2005 Hi Maureen I dont have any extra advice to add i just wanted to say that one of the most helpful things you can do is support and believe in your niece. From your post it sounds like you are really doing that already and that helps sick people so much, especially when its a not a very mainstream illness. I hope you find the right drs for your niece, best of luck! Quote Link to comment Share on other sites More sharing options...
Poohbear Posted October 7, 2005 Report Share Posted October 7, 2005 Welcome to the site and I'm glad your able to be a support person for your niece. I'm sure it's scary and difficult for both of you. There is lots of good info here and at the links as well. And there's lots of warm and caring support here too.Good luck with your search for info and please keep us posted.! Quote Link to comment Share on other sites More sharing options...
ruby Posted October 8, 2005 Report Share Posted October 8, 2005 can someone please help. My neice have been told she has POTS, we live in toronto and no doctor up here has been able to help her. In the summer of 05 she went down to the mayo clinic in cleavland and was given the appropriate tests to determine what she had and it has come back that she has pots. But again no doctor has been able to decifer what this is or how to possibly treat it. We are at our wits end here and every day she is getting worse & worse, very sick girl. She is only 25 and it's really hard for me to see this happening, I feel that I need to do something. I have found in the past that these kind of web sites, forums are so useful and great people with so much information and kindness are willing to help out others.Can someone please explain to me what this condition is all about in plain terms and maybe share some suggestions or stories of help for us.I really appreciate your kindness.Maureen Evans <{POST_SNAPBACK}>Maureen....MY first time on the forum and saw your note. My heart goes out to you. My daughter (17) was diagnosed with POTS last Spring...but not until I had done all the research myself and dragged articles to docs etc. Up until the tilt-table test, I think they still didn't believe me - then she "failed" (passed out) in 4 minutes - the most dramatic case this cardiologist has ever seen. Anyway, my method was to print out articles and give them to the docs. There are excellent ones on the list here, and the website itself is very helpful. We tried a couple different meds, but she is now on florinef and prozac (the florinef increases risk for depression in young women)... and has gotten about 90% recovery of her normal life. This week she had a set back which I am going to post about. Anyway, if you need more support, write back... Hang in there...Mayri (Ruby) in San Diego Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted October 8, 2005 Report Share Posted October 8, 2005 welcome! I dont live anywhere near toronto, so I cant help with drs but I wanted to say welcome. Quote Link to comment Share on other sites More sharing options...
Laura Posted October 8, 2005 Report Share Posted October 8, 2005 Hi Maureen. I am from Alberta and have much the same difficulties that you are describing. When I was told that I had pots I was told in a phone call, and the doctor simply gave me the name of the condition and advised me to look it up on the internet to see what it was. This site is where I got all of my information. (Where would I be without you guys... ) If you can be seen by Dr. Schondorff, as Margaret (Biatecki) suggested, it might be a very good option. Or perhaps the doctor your niece is seeing now can consult with Dr. Schondorff and get some suggestions for medications to try out and any other ideas they might have. You could also print off the info from this site describing what POTS is etc, and give that to the doctor so you can work together on a plan of action. I am having a very difficult time getting treatment as well and it is terribly frustrating. I hope you find good suggestions that will work for your niece here as well as good support. Glad you found us! Laura Quote Link to comment Share on other sites More sharing options...
becky Posted October 8, 2005 Report Share Posted October 8, 2005 hi maureen, welcome to the site.i'm twenty four so i know what your niece feels like, there are lots of helpful links on the site and everyone is really helpful and nice. hope your niece feels better soon.becks x x x Quote Link to comment Share on other sites More sharing options...
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