Clairefmartin Posted March 22, 2012 Report Share Posted March 22, 2012 So after a 3 1/2 hour wait, and an hour visit, I'm finally home from seeing Dr. Chemali and done eating dinner. So for anyone who cares here it is: He is really nice, and is opening an autonomic center 2 blocks away from me within the next month!!!!! I almost passed out when he told me. SO hopefully no Vanderbilt, because he is getting every last bit of equipment they have there (except the blood volume testing stuff). This s really good news for everyone on the East Coast, as we are right in the middle, and way closer than the other big 3 centers! On a personal note - he said "you have POTS plus" which I knew, but loved finally hearing. He was not threatened by my input and complimented me on my having read so much literature, which was nice - no ego issue with it. He said I have Autonomic Neuropathy causing my POTS and we need to find out why (LOVE), and he thinks it is autoimmune. So I'm getting loads of blood work, another (non chemical) TTT, and biopsies to start. He is testing for amyloidosis, Sjogrens, Diabetes (yuck), and a few really rare ones that I don't remember. Once the lab is set up in a few weeks, I'm one of the first in line for a full work up. And - he even will talk to me over the phone instead of making me come in every time for results and follow up, since I have to go everywhere by stretcher via Med Transport, which is expensive. I am still in the testing/follow up/wait/repeat mode - but that is ok - after 10 years I may be closer to an answer, and some treatment for my more recent extreme yuckiness (over a year of it!). All in all - he was very nice, listened, we have a plan, and I am happy. He was rushed, as it was 6 PM when we were done and he was going on call, and they apologized profusely for the waiting, so I totally forgive him because his bedside manner was so great and HE IS OPENING AN AUTONOMIC LAB IN MY NEIGHBORHOOD! So he gets an A+! Quote Link to comment Share on other sites More sharing options...
issie Posted March 22, 2012 Report Share Posted March 22, 2012 YAYYYYYY!!!!!!! Hope you get answers and can share what you learn.Issie Quote Link to comment Share on other sites More sharing options...
heathmcev Posted March 22, 2012 Report Share Posted March 22, 2012 That's great news!! Where exactly is he located? I'm east coast & always interested in new resources.(null) Quote Link to comment Share on other sites More sharing options...
roxie Posted March 22, 2012 Report Share Posted March 22, 2012 I'm really happy for you!!! My dr told me "a firm diagnosis solves 90% of the problem". And you're getting closer! Quote Link to comment Share on other sites More sharing options...
jackiemxoxo Posted March 22, 2012 Report Share Posted March 22, 2012 Claire, That's awesome news! I am glad that he was able to help you and that is good that you can keep us informed about the new testing center. I really do hope you find some answers soon! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 22, 2012 Report Share Posted March 22, 2012 That is great news!! So glad for you!!(I am also glad to hear about this b/c I am about 2.5 hrs from you. It's good to know this will be so close if I ever need it.) Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 22, 2012 Report Share Posted March 22, 2012 Wonderful news! Having a doctor handy that understands AND wants to get to the bottom of it is priceless! Please do keep us posted. Quote Link to comment Share on other sites More sharing options...
puppylove Posted March 22, 2012 Report Share Posted March 22, 2012 That's great!!!!!!!!!! Is it in VA? Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted March 22, 2012 Report Share Posted March 22, 2012 I am on the east coast too! Where will this center be?? This is very exciting news!!!!!!! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 22, 2012 Report Share Posted March 22, 2012 nice break! Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted March 22, 2012 Author Report Share Posted March 22, 2012 Thanks everyone! I feel like I've won the dyautonomia lottery. It will be at Sentara Norfolk General Hospital, in Norfolk, Virginia (next to VA Beach, which is where I move back to in a few months, we only moved to Nirfolk to be close to the hospital during this mess. Still only 15-20 minutes away). Here's the link (they are still getting set up, not sure if they are taking appointments yet):http://www.sentara.com/Doctors/Neurologist-Kamal-Chemali-MD/Doctor-ID/1300337My hope is that he will train up a few more docs or import some from the other clinics and really make this a quality center. The hospital is closely connected (as in next door) to a medical school, EVMS, which actually has great doctors and some fancy famous research docs (like my Endo- who discovered the gene for diabetes), so there is some good potnetial here. We'll see! He wanted to hear more about my thoughts on what was needed, I slipped in that I am part of a few NPO's and patinets groups, and he wanted to talk more. Yay! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 22, 2012 Report Share Posted March 22, 2012 Thrilled for you! Hope he figures it out! Quote Link to comment Share on other sites More sharing options...
arizona girl Posted March 22, 2012 Report Share Posted March 22, 2012 I took a look at his bio pretty good training and hospitals. Interesting that he specializes in neuromuscular disease. That is what my neuro's practice specializes in and I wonder if he part of the small group of neuromuscular docs that talk to each other that my neuro participates with. These docs are focused on looking for cause and know to test for some of the more unknown causes. My neuro initial tested me for things like stiff persons, amyloid and looked at the anti hu and tests like that. He also saw the big picture with me and knew my neuropathy was autoimmune based, even if we couldn't figure out what it was yet. I finally presented with hypogammaglobulinemia and now have been found to have autoimmune hashimoto thyroid, autoimmune lichen planus which are often found as companions with hypogamma. He and my rheumy have also diagnosed what is being called UCTD undefined connective tissue disease because I haven't fully presented with lupus or sjogrens though I have positive markers pointing to them.So I'm really excited for you and if you test positive for anything you will have more treatment options available to you, other then just pots symptom treatment.Question are you not able to be upright at all? Are you able to use your muscles? I was wondering why the type of transport you require. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted March 22, 2012 Author Report Share Posted March 22, 2012 Question are you not able to be upright at all? Are you able to use your muscles? I was wondering why the type of transport you require.Thanks, and I hope I get the same in depth Dx you did! He worked with all the autonomic big wigs like Chemlinski at the Cleveland Clinic, and has a great patient rep as being a good diagnostician.The pooling in my right leg is so severe that if I have my legs down at all I pass out. I was hospitalized for 9 months during a crazy pots pregnancy and made to lay on my left side almost the enrtore 9 months, so now 7 months later after giving birth - my orthostatic and excercise tolrance are down the drain. My muscles (under a nicely developing layer of fat ) are strong, I just have to be reclined most of the time. I can walk about 10 steps before I hit the deck, and stairs are the devil. We live in a temporary apartment near the hospital, and there are stairs. Hense, the med transport.thanks! Quote Link to comment Share on other sites More sharing options...
arizona girl Posted March 22, 2012 Report Share Posted March 22, 2012 wow, how you did and are doing this w/pregnacy and a brand new baby, wow! You and Jen sound like you both hit the deck quick. I count my lucky stars that my sfn/autonomic is still compensating with the postural rise in norepi causing the hypertension, as I'm still standing for the most part. I've learned to avoid the triggers that bring on the near syncopes. When my bp drops like that though I am so acutely ill, cold clamy sweats, nausea, ears plug, everything turns yellow so I can't see, them my legs turn to noodles and I melt into the ground like the wicked witch of the west and can't get back up until it passes. The scary thing about it is on TTT I almost went into asystoli, so it is scary that it could have also happened during one of those episodes. It's awful but infrequent, I can't imagine that happening every time you stand.I'm so happy for you and hope they get to the bottom of it sooner rather then later, you've already been waiting a long time. Take care girl! Quote Link to comment Share on other sites More sharing options...
chipper Posted March 23, 2012 Report Share Posted March 23, 2012 Oh my!! You have won the lottery!! Even better!! Way better!! Soooo happy for you!! This is truly a dream come true for an autonomic. That is my pet name for us.Please keep us updated. Hugs & Hugs Quote Link to comment Share on other sites More sharing options...
k&ajsmom Posted November 28, 2012 Report Share Posted November 28, 2012 Hi CF,I know its been a while since you posted this and I was was wondering how things went with the new clinic in norfolk. I just found out about it yesterday and am considering giving it a go but I am self pay so wanted to know if you give me some feedback before I switch docs up again. Pm me if u dont wanna mention on here if you can. I would greatly appreciate it.PS I hope your doing well and improving, I admire your courage getting through a pregnancy and fighting so hard...I wanted another child and when pots flared into my life again I knew I couldnt handle it but you give me alot of hope... take care!!! Quote Link to comment Share on other sites More sharing options...
joyagh Posted November 29, 2012 Report Share Posted November 29, 2012 So did your POTS start during pregnancy? Mine did. I'm not sure if I'm just over-adrenalyzed and have adrenal fatigue or if I developed an autoimmune disorder due to the pregnancy. I don't have a good POTS doc. Just moved and just have a PCP. My beta blockers help 75% most of the time now, so I'm not doing much active testing/treatment etc.I'd love to hear what you find out from your new doc. Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted November 30, 2012 Report Share Posted November 30, 2012 Such fantastic news! Yay! Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 3, 2012 Report Share Posted December 3, 2012 Very cool! Hope he finds a cause, looks like he is doing all the right diagnostic searching, keep us updated please! Quote Link to comment Share on other sites More sharing options...
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