HopeSprings

Aww, congratulations - so happy for you! I think it's too soon for you to assess symptoms, as your body isn't back in its natural state yet. I agree with Chaos about the bedrest, physiological stress, surgery, anesthesia probably influencing things, plus it will take some time for your hormone levels to go back to normal. Hoping you will see improvement over time. Enjoy your precious baby.

Happy it's in the news, but why do they always have to sugar coat it in the end. He started strong but then Benign? Prognosis is good? ... um, I beg to differ. I agree with you guys, just being "not dead" doesn't quite cut it for me. I want to live!

Oh Katie, I really do hope this will provide some relief. Please remind us again a little before the surgery so we can cheer you on.

I was recently officially diagnosed with EDS too. Not sure how to feel. Part of me is happy to finally know the underlying cause, part of me is sad it isn't something curable. And questions do remain... is this really the cause of everything? what now? I think it's going to help with acceptance, but after all these years of searching, I think it's going to take some time. I'm happy you were diagnosed pretty quickly and like you said, this is a starting point and maybe there will be things you can do to feel better.

That's great, June! Yes, Katie that is so cool about the anonymous donor! The fund is now more than halfway there!

Just wanted to post an update for those interested in the new POTS antibodies study fundraiser. The Dysautonomia International fundraiser which is raising money to do a second larger study is almost halfway to its goal of $50,000! Most of you are probably up to date on this information, but for anyone who isn't, an anonymous donor is matching dollar for dollar all contributions up to $10,000 for the month of April. This is a great opportunity to double our efforts. If anyone is interested, here is a link to fundraiser page: http://www.dysautonomiainternational.org/page.php?ID=178 The posting of this information was approved by DINET administration.

Good luck, Katie. I'm worried for you, but I know you're smart and do your research and wouldn't enter into something like this lightly. Please keep us posted and I hope for the best possible outcome for you.

Oh, thank you Rachel! I will definitely be reading the articles you posted! I'm not clear on the connection between PANDAS, the Cunningham panel and the new Adrenergic Antibodies that were recently found. Can you clarify?

Looneymom, I have questions if you don't mind. Is the M. pneumoniae positive as IGG or IGM, meaning shows as active infection or past? I ask because I have very high levels, but IGG only. Also, what neuro antibodies are you talking about? Are these the same ones recently reported on out of Vandy and University of Oklahoma? Was he actually tested for them? I hope you have found the answer and your son will be much, much better.

Kim, we have the same neck! Mine is also long and I just measured it -out of sheer curiosity- and mine is 11 1/2 inches too. Have you tried looking into it yourself as far as possibly causing any of your non-neck related symptoms?

Oh and I saw this video recently of Dr. Rowe and at one point he talks about the case of a young woman with POTS. It sounds like a cervical disc replacement solved her problems. Is this really possible? It's right around minute 46, 47. https://www.youtube.com/watch?v=UCbWEKQHjdk

Thank you for posting that, Katie. That actually sounds a lot like my neck, but the guy I saw said these were common changes that often happen with age and I guess not a big deal. I'm not sure whether I believe that or not. This started in my 20's/30's. Please let us know what second opinion neuro says.

Katie, would you mind sharing what was seen on MRI, how radiologist reported things versus what Dr. Henderson saw? Just curious how off the radiologist can be. I actually had the opposite where the neuro-surgeon said things weren't as bad as stated in the MRI reports. Mmm, my symptoms say otherwise. The Doctor I saw is not well versed in the things we're talking about though. Please let us know what the second opinion Doctor says. Is he knowledgeable about EDS? Glad to hear you have family support if you do have the surgery.

Hi Katie. Can I ask what MRI shows in terms of those discs and why he feels removal and fusion is needed? Also, what symptoms he hopes to improve with the surgery? I've always suspected my neck, but would hate to go through something major like that and not be better, or even more concerning.. potentially worse or add in new problems. It's good he suggests a second opinion.

I can identify many possible triggers. One of them is Levaquin.

I like any study that disproves the placebo effect in us. Aka yes our problems really are physiological, not psychological. I wonder if "mornings" are the issue though or if it's being supine and/or sleeping for that many hours. Would the same thing happen if we slept all day and they took our measurements at night or is it really a morning thing? I feel horrible after a nap - low BP, tachy, dizzy.

I would disregard the journalist's comment, she must have misunderstood something.

I know, Dave, I want this done YESTERDAY! But at least we finally have something to feel hopeful about.

Just passing it along. http://kfor.com/2014/03/04/oklahoma-teens-dreams-of-basketball-dashed-by-unusual-diagnosis/

I don't know if this helps Targs, but this is from the discussion portion of the article: "The variable co‐presence of vasodilatory and vasoconstrictive autoantibodies supports a spectrum of autoantibody expression varying from idiopathic OH(2012)–(2012) to POTS, and likely includes patients with inappropriate sinus tachycardia.(2013)"

Can I applaud and hug you? LOVE how you handled the psychiatrist. I am so sorry you're having trouble with the professionals who are supposed to be HELPING.

Sue, the testing isn't available now. A second study will be done which will include a lot more POTS patients. Unfortunately, NIH rejected funding so Dysautonomia International is stepping up fundraising efforts to help get this thing done. If there are any important updates that are not posted to DI's main website, I or others will update here for anyone not on Facebook.

Lots of excited and hopeful POTSy buzz around this one and had to share here! An article explaining the findings and a link to the study within the article and posted below. http://www.dysautonomiainternational.org/blog/wordpress/new-evidence-of-autoimmunity-in-pots/ http://jaha.ahajournals.org/content/3/1/e000755.full?sid=2a92ae76-d6fc-491c-9e79-43190d584090

I second what Christy said about connecting with others online. It's been a lifesaver for me and often the only thing that has helped me emotionally. June, I really feel for you as a mother. This illness has been so hard on me as an adult, I just can't imagine one of my children having to go through it. The fact that she has a mother who believes her, supporting her and trying so hard to find solutions is hugely important. Many of us have had a difficult time with family understanding how bad this can be which takes an additional toll on us. I wish you both the best.

Yes, I started getting chilblains a few years ago. I realized if I keep my feet warm, with socks on at all times in the winter I can avoid them.