jenglynn Posted December 13, 2011 Report Share Posted December 13, 2011 Well, I am back from my appointment yesterday. I wish I could say I am cured but that is far from the case. I did like the doctor, he is a well respected doctor (electrophysiologist/cardio) as well as one of the top professors at the Medical School there. He actually listened to me, went through all of my symptoms, wrote everything down. He had reviewed by records thoroughly before he saw me. He was compassionate. BUT.. he didn't have any answers.When I first got there, in my wheelchair, sitting, my BP was 68/52. So pretty low while sitting. So my hypotension is progressing. While I was lying down, of course, it was normal. 104/80. When I stood, I had syncope and I don't know what my BP got down to but it was very low because they had to call the doctor in immediately. Tachycardia was pretty high.I am a little confused about his "diagnosis" but he is one of those doctors who doesn't believe you can have such low orthostatic hypotension and it be a typical P.O.T.S case. He said P.O.T.S is really a catch all dx because there is so much not understood about autonomic disorders. He said that I am too sick to have a "normal" case of P.O.T.S and in his 25 years of practice he has never seen anyone like me (wonderful). He is that whatever I have, it is a severe autonomic disease, most likely genetic, and he also said it is progressive so we need to treat this aggressively. It has gotten so much worse in the six months since I've had it and my BP gets lower every week. And tachy gets higher. He is curious about my hypermobility especially because I have a daughter with the same symptoms (and at 13 has had a few syncope episodes). It also appears my thyroid and pituitary glands are failing based on that blood work. Have a scan for those next week. So he is consulting with some other doctors in other parts of the hospital and will get back to me this week about a plan. I have no warning with my syncope and I am not one to just crumble down when I fall... I fall and fall hard. They are also worried about all of the head injuries I've sustained during this. He suggested a helmet but said that would not prevent a concussion. I've already had 5 in two years.So I don't know anything more than I knew before. Other than this morning I have a new symptom, which I can't believe I am admitting , but I had 2 episodes so far of incontinence of urine. It wasn't during syncope, I just went into the restroom and was sitting on my chair next to the sink where I take all my morning meds and out of the blue, with no warning at all, I wet myself. It happened again about 2 hours later while I was sitting on the floor. Has ANYONE heard of this happening or had it happen? I am absolutely horrified . Today is the first time this has EVER happened to me, even a little leak when coughing or laughing. I have always had a strong bladder. I was a little discouraged yesterday but trying to stay positive. I may have to go through lots of genetic testing to try to figure this out. Or he said it could be a form of something no one has ever had. He just doesn't know. He said he knows people with P.O.T.S can be disabled and very sick but he said he has a hard time labeling me with a typical P.O.T.S diagnosis. So now I wait to hear back and continue living like this. Anyone with kind words of support or suggestions, I would love to hear them. I wasn't planning on coming home cured, but I thought maybe I would have a few answers. Not, "Wow. You're a special case and we don't know what to do with you yet." Thank you all for reading and listening to me. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 13, 2011 Report Share Posted December 13, 2011 I'm sorry that you didn't come home with answers, but it's hopeful that he has the resources and willingness to try to come up with a treatment plan. Hang in there!!! Quote Link to comment Share on other sites More sharing options...
corina Posted December 13, 2011 Report Share Posted December 13, 2011 i'm very sorry jenglynn, about both the incontinence and not having a plan (yet) to start working on getting better. i've had the incontinence too both bowel and bladder. i felt so very embarrased and remember how my son witnessed and asked: mom, are you wetting yourself? and i had to say yes, i'm so sorry. but he was amazing and tried to comfort me and even helped cleaning up as i couldn't do that myself.from the time i started octreotide i got a lot better and the incontinence went, i feel so very blessed. but most of all i feel blessed having such a caring family. i hope your doctor(s) will come up with a treatment plan soon and that you'll start to improve.corina Quote Link to comment Share on other sites More sharing options...
jenglynn Posted December 13, 2011 Author Report Share Posted December 13, 2011 Corina,THANK YOU for sharing that with me. I feel a little better knowing I am not alone. But sorry you had to go through it. I was just horrified was it was happening because I was just in shock! I too am lucky to have a wonderful and caring family and feel so blessed, especially when I read about some on this forum who have family members who don't believe them or dismiss my symptoms. How awful that must feel.Maybe my expectations were too high yesterday but I did learn some things I guess and I do believe that he will follow through quickly because he did say this needs aggressive treatment so that was promising. And at least he listened to me and believed me and acknowledged that I am very sick and didn't dismiss me. In that respect, I guess I was fortunate, right? Quote Link to comment Share on other sites More sharing options...
jenglynn Posted December 13, 2011 Author Report Share Posted December 13, 2011 And I am sorry.. thank you, thankful for your kind words and support. I am not giving up and trying to hard to be positive. I know that a positive attitude can make all the difference. Sometimes this is so hard to deal with (sometimes, almost ALL the time, especially when new symptoms keep showing up and the others keep getting worse) but I have a caring family and doctors who are willing to help so I consider myself one of the lucky ones I guess. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 13, 2011 Report Share Posted December 13, 2011 You're welcome And please don't feel that I'm diminishing you're symptoms. You certainly have it rough, and I understand how you could be frustrated! If you get too impatient, or if you continue to worsen, it may help to call up the U W dr's office and ask how their search for treatment is going. Quote Link to comment Share on other sites More sharing options...
jenglynn Posted December 13, 2011 Author Report Share Posted December 13, 2011 Thankful,You weren't at all dismissive, just supportive!! Thank you for taking the time to reply and give me some support and advice.I did hear from my own cardio/electrphysiologist who referred me to Madison this morning. The doctor from UW-Madison did call him yesterday with a full report and his plan to consult this week so I felt that was a good sign. He was actually on the phone with my personal cardio within 20 minutes of me leaving his office. I think if I don't hear anything by Friday I will definitely call them and see if they think it is something they can handle. If not, I am going to see if all of these doctors will work with my insurance to get me to Mayo in Rochester (only 45 min away from me, I am lucky). Initially that is where my doctor wanted me to go but they denied my referral and sent me to UW instead. But if they can't treat me and it is documented then I need to go to Mayo to try to figure this out. And from what I have heard on this forum, that seems to be one of the best places for results. Quote Link to comment Share on other sites More sharing options...
Brye Posted December 13, 2011 Report Share Posted December 13, 2011 Sorry, praying you get some answers soon. It's so frustrating when you have to travel so far for medical care when you live so close to a place maybe even more capable of helping. It's so stressfull waiting for answers and then even more stressful is the trial and error part when trying to get the perfect med combo. Scary time but hope they can get it figured out for you so you can get back to life!!! Keep us posted. Thinking of you!Brye Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted December 14, 2011 Report Share Posted December 14, 2011 I had a feeling about that rapid dropping BP issue. I'm glad he didn't just lump you into "POTS," without looking at the whole picture. He sounds good, thank God. I hope you get an answer and some help. Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 14, 2011 Report Share Posted December 14, 2011 Jenn,I am sending good thoughts your way. It is really hard to hear that the doctors don't know but at least it sounds like this doc is willing to attack the problem head on. That's a positive! One day at a time...Katie Quote Link to comment Share on other sites More sharing options...
Chaos Posted December 14, 2011 Report Share Posted December 14, 2011 Glad you found a doc who is at least willing to TRY to help you and was willing to listen and not just label you automatically with POTS if that's not the diagnosis that fits. Sorry he wasn't able to provide you with more answers right away but it sounds like he's taking you and your condition seriously. It would seem very likely that if he can't help, he'd help you get to Mayo or somewhere that might be more able to help. It's good to hear your current doc has at least had enough experience with POTS to know when you DON'T have it and is looking for other ideas for treatment. That's a huge start on the process of getting better.So sorry to hear how challenging this has been for you and now to add the other issue (incontinence) to it. I would think that since the bladder is another organ under autonomic control it would be understandable that it could become a problem. Sorry you're having to deal with this on top of everything else now too.Keeping you in my thoughts and prayers. Please keep us posted! Quote Link to comment Share on other sites More sharing options...
yogini Posted December 14, 2011 Report Share Posted December 14, 2011 Although your case might be strange for your dr, your symptoms sound similar to many on the forum. There are tons of people here with EDS and such low BP. There is no such thing as "typical" POTS anyway. I think doctors who don't spend all day treating POTS patients think tht it goes away with beta blockers and improves in a year or 2 and are surprised how severe it can get. I have been told by some docs that I'm the worst case they've seen and I am very functional - i just need a bit more rest than avg person. I was just giving info to one of my friends this week and the Dinet site says 25% of patients are disabled. Doctors dont agree on definitions and Even if you don't have "POTS" you could well have NCS or another form of dysautonomia, which basically have the same treatment as POTS. It is great that you found a dr to work with you. Most doctors wont even call back, seriously!There are lots of treatments to help keep up BP. You may be getting worse because you arent on right treatment. I hope you and your dr find something that helps you feel better soon! Quote Link to comment Share on other sites More sharing options...
yogini Posted December 14, 2011 Report Share Posted December 14, 2011 That is awesome you are so close to Mayo - if you are fainting, in a wheelchair, DEFINITELY go there, regardless of whether this dr is good. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted December 14, 2011 Report Share Posted December 14, 2011 I have also experienced bowel incontinence. That's extremely embarrassing, because of the odor. I know that there are others on the Forum who also deal with urinary and bowel incontinence, too. Thankfully mine is not constant, but I never know when it's going to happen.I was diagnosed at Mayo in Rochester, and it's a great place. The doctors there don't diagnosis 'POTS' if you have a major blood pressure drop when you stand up. Normally, you would have no change or about a 10-15 point change in BP when standing with their definition of POTS. POTS in many places is defined as a heart rate that shoots up 30+ points when you stand. I have autonomic neuropathy and small fiber neuropathy along with a couple other issues, and my BP drops about 50+ points when I stand, and my HR goes up about 60 points or so when I stand. There are many different kinds of dysautonomia.I hope you get to Mayo and get some good answers. I was pretty close to Rochester, too. My home town is in Ames, Iowa, so when I visit my mom I used to drive up there. Now I see Dr. Goodman at the Mayo Clinic in Scottsdale, Arizona. He's terrific. Good luck, and please keep us posted!Jana Quote Link to comment Share on other sites More sharing options...
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