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Lisa, Okay..I'm not sure if I've missed something in your former posts..are you talking about treating POTS by wiping out your immune system?...or do you have other issues that your doctor is trying to address? I am NOT a medical professional..but I would advise you to think long and hard about this..and WHY do you have to make a decision by Friday?! Is your doctor familiar with autonomic problems? I ask because I've never heard of this approach to treating dysautonomia before. Have you been tested for autoimmune issues before? Have you spoken to your doctor about the new reasearch being done on antibodies and plasma exchange? I'm sorry..not trying to tell you what to do..but PLEASE take time to think this over and I'd urge you to get a second and maybe third opinion before doing something so drastic and irreverable. And don't let anyone pressure you into making this decision by FRIDAY..it's your body and your life..take the time you need!!!

Hey guys..I talked to my doc. back in November about getting this test done..he was going to look into who we needed to send it to and what the procedure would be. I think he was going to look at sending it to TX or Mayo.. Belinda..do you know what the procedure was to send the bloodwork to TX? Did your doc. just contact Dr.V in Dallas? I ask b/c I have an appt. with my doc. next week and want to get this done sooner rather than later..I'd like to go armed with info. in case he hasn't had any luck finding out who to send it to. I did some research on plasma exchange and it's considered relatively "safe". They actually use it to treat a variety of disorders..even MS and RA..I was really surprised. I suppose it does take a long time and I'm sure it's expensive..but like you said Belinda..I'd give almost anything at this point to get some relief! Happy New year Everyone!

Congratulations Jessica! I'm so excited for you..it's nice to hear about good things happening! Your baby is precious..I can't believe how big he's gotten.

Jaquie, I'm sorry for your experience and I agree with Nina..you should contact the proper channels and report this. I used to work in health care as a lot of us have and what they did is not only rude..it's actually against the law now. Carmen mentioned HIPPA and this would fall under "confidential patient information" and if people could hear them speaking of you in the waiting room they have violated HIPPA regulations and should be repremanded! This type of thing REALLY irritates me...I always tried to be very careful and respectful when I was working with patients..It disappoints me that others aren't! Good luck!

Hey Pres, I get this feeling every now and then..even run a low grade fever but not ness. in conjunction with low bp. My doc. feels there is a tie in to the autoimmune system with POTS but no real research connection yet. It could be a virus I suppose but I know the symptoms you are discribing..I feel almost flu like..not the normal POTS stuff. Maybe some day we'll know the answers?! If you don't improve or get a fever go see a doc. and make sure there's nothing else going on! Hope you feel better soon..good luck with your paper!

Hey Bama, You might want to try clonodine..it helps to break up and relax your sympathetic tone. I take just a little at night and it seems to help. It's something you could discuss with your doctor..I get sleepy on it but no other side effects. Hope you feel better soon!

Nina..I hope everything goes well at the hospital and they're able to give you some relief. Keep us posted!

I was suspected of having EBV or mono when I first got sick..I think I may have had it in highschool about 12 years ago and was just never dx. If you look at the "what causes POTS" section on DINET's main page you'll find that EBV is one of the main viruses thought to be a trigger for POTS..so Yes, for some of us there is a definate correlation between the two.

Happy Birthday Sun! Thanks for being such a great support to everyone!

Pamela, I know this all can be VERY frustrating and scary! Is there anyone that can be an advocate for you? Maybe a doctor or friend/family that can help you find SOMEONE that's willing to explore these symptoms a little more? I hope that you are feeling better soon!

((((HUG))) Hang in there love.. and remember you're never alone in this!!

Pamela, I read your post and was a little concerned when you said "after reading your post I know it's just another thing for me". I want to strongly suggest that if you continue to have these symptoms..ie. pain, speech problems and weakness on your right side..PLEASE seek medical attention. I know that you said your doc. doesn't know much about dysautonomia..and this MAY be related to POTS..but it may NOT. This disorder is baffeling and comes with all sorts of strange symptoms but we have to be careful not to attribute EVERY symptom to it. I know that you have already visited the ER and they sent you home..BUT if you see no improvement or have worsening of these symptoms you need to have a doctor investigate further. I'm not trying to scare you..just want to make sure everything is okay!

Hey Jacquie..just wanted to mention that your bp doesn't have to be low or high to have a dx. of POTS..it's all about your heartrate. It has to increase by 30 bpm. upon rising to an upright position..or I believe reach 120 bpm..this is what they are supposed to use to dx. POTS specifically. As far as you haveing symptoms whithout bp issues I have it all the time...It does not really matter for my body weather I'm laying down, sitting, or standing..I can feel "icky" at any time. You need to keep in mind that although the main symptoms used to define or dx. POTS (heartrate).. are not the only ones we have..there for we can have a variety of other things going on and contributing to the dizziness and sweating you experienced..such as your sympathetic NS going hooky on you...hormones influencing your body..dehydration ect. So..my point is that you can have a semi- normal heart rate and bp and STILL have symptoms of autonomic dysfunction..at leaste I know I do. If this is wrong then someone feel free to correct me!! I feel it's more important that doctor look at the WHOLE picture and not just one test to reach a dx...Unfortunately many simply don't take the time. The "specialist" that originally intreperated my TTT..said I had an "a-typical anxiety disorder"..you want to know why? Because apparently on this 10 minute tilt they did by heartrate only increased by 26 bpm...and I didn't stay at 120...my bp was in the low range but didn't fluctuate much........he ignored all my other symptoms..and I'm telling you I read like a POTS text book. You must be your own advocate..of anyone on this earth YOU know what's going on inside your own body and if you feel unsatisfied with the answers you are given regarding these tests then seek other opinions!!

Way to go Nina!!I knew you could do it! Now get some rest and enjoy your ice-cream!

What an amazing and beautiful experience!! You have a way with words Persephone..I felt like I was with you..thanks for sharing that moment with us.

Hey Dizz, I was reading about your docs. not wanting to put in a line for IV's due to possible infections and thought you might want to ask them about a medaport. I've been trying to decide if I want to try IV fluids but insurance doesn't cover home visits so I haven't had any yet...anyway a nurse was telling me that if fluids were going to be required often and I didn't want a line they could put in a medaport. She explained that basically it's a disk that is inserted under your skin in a minor procedure. Then the IV's just are inserted into the disk and you don't have to worry about infections like you do with Picc lines. I hope that you start to feel better soon!!

Just wanted to give you a quick reply..I was approved for social security disability the first time I applied. My only dx. is POTS and I was very fortunate to be approved without having to go through the appeals process. I agree with the others that you should do a search on this topic...I got a lot of good advise and info. from the memebers of the forum that I used to help my case.

Hey Traci..sorry you're going through so much..but happy that you've found someone to help. I'm anxious to see how the plasma exchange will benifit you..ever since Mel posted that article I've been wondering about it. My doc. in FL is going to order the test for me as well..just haven't figured out how yet..I believe Mayo is the only place that does the testing. I did read that this treatment is used for a variety of other disorders too..like myasthenia..so I hope it will start to help you soon!! On a side note about the MG..the quarter back at Auburn University (my alma mater) has MG..he apparently was out of school for awhile for treatment and now he's the starting quarter back and doing very well! Goes to show that you never know what's around the corner with these disorders..keep your chin up!!

Happy Birthday..a couple of days late!! Thanks for all the support and inspiration you give us every day!! I so glad that you had a good B-day..the cake sounds yummy!

Hi all..it would be interesting if environment had something to do with this..I think it's probably a noticable "phenom" b/c of the doctors in the area. They have more knowledge and therefore more patients are dx. there..following this idea..more people are given info. regarding this web site by doctors who are familiar with it. I'm not sure I would have found DINET..at least not as quickly..if it were not for my doc. I was born in Louisiana..and grew up in TX..now in AL. I also agree that pop. densitiy has something to do with it. I really believe that there are many out there who have yet to be dx...and there may be some who simply don't know about this site OR have never registered and simply read the posts and get the support they need that way. Hope you all had a great turkey day!

Way to go!! That's soooo awesome!! I'd love to know more about your book and where to get it..if you read this send me a pm..if not I'll send you one soon! Congrats again..such a great accomplishment!

Happy Birthday Jessica!! I miss seeing you on the board but I'm glad that you're keeping busy with your boys! I hope you have a wonderful day!

Just wanted to letcha' know that if you do a search for "dysautonomia" on webmd you will find several links to info. regarding NCS, Orthostatic hypotension, and MSA..along with a couple of other topics. It's not much..but they do have something listed! When I was originally searching for info. I always used "dysautonomia" or autonomic dysfunction..you tend to find more info. with these general terms.

Morgan, I'm so happy to hear that your doc. has your back!! There are still physicians that actually care about their patients..what a relief!! I've been fortunate with my doc. too..he's really great..it makes a Huge difference to have such an advocate!

Just wanted to add my congratulations! What an accomplishment..I can't wait till you can share your essay with us!