julieph85 Posted January 9, 2012 Report Share Posted January 9, 2012 I just got back from Mayo in Arizona to see Dr. Goodman. Thank you to the ladies that referred me to him. He is WONDERFUL. I finally got a diagnosis- autoimmune mediated POTS. He said I have the classic form of POTS where my BP's and heart rate fluctuate rather than stay high or low when standing. The cause is my immune system is now creating antibodies to my autonomic nervous system. What was most interesting was his suggested treatment. He said that he sees about 500-600 patients for POTS and out of that he has 5 that are autoimmune related. He has recommended IVIG for everyone of them. He said that he would recommend it to me even above them because i'm the most autoimmune he has seen (ANA through the roof in addition to all my other antibodies). He thinks the IVIG has a 50% chance of putting me into full remission, as well as all my other autoimmune disorders. However, he said it is highly unlikely I will be able to find a doc out here on the east coast that would do it for POTS. Looks like I may have to move to AZ. It actually works out because my husband and I have wanted to move out there for some time anyway to be nearer to my mother in law. What impressed me the most with this doctor is his knowledge of pots. I have seen soooo many specialists here in Maryland and have had so many different diagnosis, with most just being that they have no idea what is wrong with me. It is such a RELIEF to talk to a doc that not only knows his stuff about dysautonomia but can actually pin point a definite cause in mine. Looks like the preganancy sent my immune system into haywire. I'm going to wait on the IVIG because of all the side effects but am going to do the salt, water, exercise, and back on the immune drugs for my RA. He says 24 hour urine sodium concentration is a surrogate marker for blood volume. He said mine is SUPER low so most likely my symptoms are caused by hypovolemia instead of pooling. Interesting and SOOO useful! So much more useful than the dysautonomia doc here in MD that told me I dont' have pots, but intstead have the body of an 80 year old woman. Thank you MAYO!!!!! P.S.- this may be inappropriate but I have to say it, no one told me Dr. G is also super cute! Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 9, 2012 Report Share Posted January 9, 2012 Yay!!!! I'm so glad that you were encouraged and finally have some hope! Quote Link to comment Share on other sites More sharing options...
RunningWild Posted January 9, 2012 Report Share Posted January 9, 2012 Really glad you finally got some answers!! Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 9, 2012 Report Share Posted January 9, 2012 I am so happy for you, that is such good news! So when you were talking about ivig, did he say he would only use it on the 5 autoimmune patients or the 500 to 600 other patients? Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 9, 2012 Report Share Posted January 9, 2012 p.s i am going to mayo in february, thanks for the warning about dr. g Quote Link to comment Share on other sites More sharing options...
jenglynn Posted January 9, 2012 Report Share Posted January 9, 2012 Julie,I am so happy for you. Not that you have autoimmune mediated dysfunction but that you have answers. And you FINALLY found someone to listen to you!!!! I went to Mayo in Rochester last month and received almost the exact diagnosis. Mayo sent me home with discharge orders for IVIG and my hospital had no problem following them. And now you have a different diagnosis than just P.O.T.S but an autoimmune disorder not to mention autonomic dysfunction. Did they tell you that they were certain the two were combined? The doctor I saw in Rochester said that he couldn't be SURE that the two were related but it was very likely. I tested positive for the initial test they do for autoimmune deficiency but there is another test that we are still waiting for which COULD give me the nature of the autoimmune problem or could not. I was also given a 50/50 chance of the IVIG working. So far, side effects have been hard but was told that I should expect that I would not see major improvement until the full course was completed. It seems the further advanced it is, the longer it takes (which makes sense) because my autonomic dysfunction neuropathy was one of the worst they had seen in some time. Sounds like we had a lot in common!!!!I am just so happy to hear you have some answers, Julie. My 12 days inpatient at Mayo were difficult (human pincushion) but life changing. I finally feel like even if I live with it for the rest of my life, there are people who will treat me, listen to me, and understand that I am not somone with panic attacks and anxiety looking for attention. I am chronically ill. AND I do have a chance of recovery. All of my symptoms (as I am sure yours are as well) were random, and seemed to make no sense to anyone at all.. but Mayo was able to put "most" of the pieces together. They did put in my discharge notes that there are many things going on in my body that they haven't figured out yet but they aren't giving up and they referred to me as a "medical enigma" lol which is no shock to me... but I have a start and a plan.HUGE (((((( HUGS ))))))) to you and I wish I could hug your doctor too. Just to be treated with dignity and respect instead of disbelief and scorn is a blessing. I know that once I am able to work again which I really hope I can, I plan on working toward being an advocate for patient like all of us on this forum who have to go through not only the suffering of such a body encompassing illness but a medical community who has not decided that this is an issue that needs to be focused on and studied EVERYWHERE, not just specialty hospital. There should be a protocol in every hospital with the very basics to deal with this until we can get somewhere with the knowledge and testing to really help. NO ONE should have to go through this. You have MADE my day because you've been in my thoughts and I know how discouraged you have been. I pray this is a beginning of a brand new life for you!!!!!!!!!Jen Quote Link to comment Share on other sites More sharing options...
Maiysa Posted January 9, 2012 Report Share Posted January 9, 2012 Julie, I'm sorry about your illness, but so glad that you found a good doctor to help you. I have to tell you that I've had autonomic neuropathy for years, but no doctor recognized it and blew me off. I tried to get to Rochester but can't travel without having a seizure. I called the Mayo in Rochester and they gave me a heads up and told me that Dr. Goodman was moving to Arizona.....so I waited almost 4 or 5 months. I was so lucky to be able to get in the first day......but it sounds like he is getting very popular, I'm sure it won't be easy to get in now. haha. But he was the one to diagnose me and it was so nice to have a doctor who didn't look at me like I was crazy and to believe me. It was a great experience and he explains things so I can understand them. My insurance doesn't cover Mayo so he does his best to help me so I can do my tests back home and he always calls back and his nurse Janie is also wonderful and very compassionate and helpful even though I'm about 5 hours from them. I hope you can do something that helps you. He also thinks I have autoimmune, but for me, it's not showing up in my blood so I can't do the IVIG. Let me know how it works. Wishing you better health soon. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 9, 2012 Report Share Posted January 9, 2012 The cause is my immune system is now creating antibodies to my autonomic nervous system. Julie- so happy for you! It's so refreshing to hear about a Dr. who seems to care and actually KNOWS something. Did he say what antibody is attacking your ANS? I truly hope once you are able to start the IVIG that it is a cure (or at least very helpful) for you. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 9, 2012 Report Share Posted January 9, 2012 Congratulations! I hope this gets you feeling better soon! Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted January 9, 2012 Report Share Posted January 9, 2012 wonderful news thanks for sharing. what tests did you have done? Keep us posted Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 10, 2012 Author Report Share Posted January 10, 2012 Lemons- he said he only recommends ivig to his patients that he believes there is an autoimmune cause. In his practice he says I'm his 6th patient that he is pretty SURE the cause is autoimmune. However I believe he can't be 100% sure since no doc is sure of anything with pots. He did say that he has treated some of the 5 patients with ivig that had less autoimmune markers than I do and I have the highest ANA of all the patients he has treated as autoimmune. Quote Link to comment Share on other sites More sharing options...
issie Posted January 10, 2012 Report Share Posted January 10, 2012 Yayyy! I like Dr. Goodman too and you're right he is handsome. Hoping for more answers for you. AZ isn't so bad - I've been here for two years and am quite happy. Just make sure you move where there is a swimming pool - most essential in the summer time. Look into a cooling vest too. There are two companies that give us discounts for POTS. I guess I'm one of the 5. My Igg is low but I have overactive autoimmune issues too. I don't have any immunity to pneumonia but my immune system is attacking me with vitiligo and alopecia. These problems are on complete opposite ends of the spectrum for autoimmune. So, I'm one of those really hard mysteries. I'm also HyperPOTS with high bp's. He said I'd be one of the hardest to treat and he wasn't wrong with that assesment. I think he's about ready to give up on me. Nothing has been succesful yet. We keep trying. Have a call into him today because of the place I've been in for the last few days. Hoping for tomorrow to wake up better. Issie Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 10, 2012 Author Report Share Posted January 10, 2012 Jen- thank you so much for your encouragement and for thinking of me This truly was life changing and I'm so grateful for everyone on here taking me serious and recommending Dr G to me. I was truly desperate for help and willing to go anywhere! He said that he is almost positive the autoimmunity is causing my pots because of 2 reasons. 1) I have had poorly managed RA for 6 years and 2) ever since I developed pots I have had a positive ANA that tracks with the flair ups of my symptoms. Before pots I NEVER had a positive ANA, even though I had RA. In 2009 my pots began and was the worst it's ever been. My ANA at that time was 1290(anything above 100 is abnormal). In 2010 my pots was way better and almost gone( for no reason at all). My ANA was completely negative. In July 2011 pots began coming back. In September ANA was was 650. Pots even worse now then September and my ANA is back over 1000. He said that's a big deal to him cause ANA is a big marker for autoimmunity and I have a definite pre-pots history of it being negative even though I had RA antibodies. He thinks I may have multiple autoimmune disorders that are effecting my ANS because I'm not showing specific antibodies for either lupus or shortens which are the most commonly associated with pots. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 10, 2012 Author Report Share Posted January 10, 2012 Sjogrens- darn auto correct Quote Link to comment Share on other sites More sharing options...
issie Posted January 10, 2012 Report Share Posted January 10, 2012 Julie, If your RA has been so bad . . .WHY on earth haven't they treated you sooner for it? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 10, 2012 Report Share Posted January 10, 2012 Great news and well done. I hope it works out for you and I think its interesting given I have a similar presentation. Quote Link to comment Share on other sites More sharing options...
julie_2girls Posted January 10, 2012 Report Share Posted January 10, 2012 Julie I am new to this site. Good to hear you had a great experience. I sent you a message privately. Thank you for any insight you may have:)) Wishing you the best!! Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 10, 2012 Author Report Share Posted January 10, 2012 Issie, it's actually my fault. My rheumy has been wanting me to take enbrel for years but I always refuse because I'm scared of getting lymphoma. I've been off and on plaquenil for years but was off it for a year before my pots cause of pregnancy. Uncontrolled RA has been linked with dysautonomia but he thinks I may have another autoimmune disorder causing the pots. Quote Link to comment Share on other sites More sharing options...
issie Posted January 10, 2012 Report Share Posted January 10, 2012 If you're afraid of side effects. Make sure you look up IVIG......that one I'm afraid of. It's funny how some of us do have autoimmune things going on and that doesn't seem to get addressed.Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 10, 2012 Report Share Posted January 10, 2012 Wow, so interesting how your ANA levels so closely followed your ups and downs with POTS. Seems like a definite correlation. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 11, 2012 Author Report Share Posted January 11, 2012 Naomi- I know it's so crazy! I actually discovered this myself going through my blood work results from my rheumy over the last 2 years. I told her about it and she agreed it was weird but had no explanation. Dr g definitely thought it was a big clue as to the cause of my pots. The frustrating thing though is that ANA is only a marker for autoimmunity and not any specific disease. So we know I have something new going on causing pots but we can't find any new antibodies. It's always just the same RA ones. Quote Link to comment Share on other sites More sharing options...
issie Posted January 11, 2012 Report Share Posted January 11, 2012 Okay, just started on some steriods to suppress autoimmune things from Dr. G. I'll let you know if it makes a difference. He thinks my autoimmune is what has thrown me into the spot I'm in. Took the first dose earlier today and already having relief from the wild pulse swings. Not hurting as bad and have an ahhhh feel. Hope this keeps up. It's just a 6 day trial. I'll let you know.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 11, 2012 Report Share Posted January 11, 2012 great, good luck,. Quote Link to comment Share on other sites More sharing options...
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