mspatty1 Posted October 27, 2008 Report Share Posted October 27, 2008 Hello everyone this is my first post. I have lots of questions about this syndrome. I have had multiple sclerosis since 1999 and I have learned how to live my life around the symptoms, but now I have a new diagnosis of Pots which my cardiolosist thinks it is from the MS. I have been getting dizzy and feeling like I am going to pass out for a while when I stand up but I thought it was all about the MS and maybe the hight blood pressure I have but on my last appointment with my Cardiologist gave me the dz of POTS becouse when I feel like I am going to pass out when standing my pulse rate is going up to about 100 from my resting rate of 50. I found this out becouse I had a heart rate monitor in planted in my chest. I had a period of time with a very slow heart rate . My doctor was trying to determine if I needed a pacemaker so he had the heart rate monitor inplanted. I have been trying to follow the advice to drink the fluids and eat the salt but I have been having a lot of trouble with edema. I swell in my feet, my abdomin and my face and I get short of breath. I have gained 10 pounds in one or two days. Have any of you had trouble with edema from the fluids and salt. I also have high blood pressure this am it was 180/110 before I took my b/p med. Thank you I will only ask a few questions at a time. I am seeing my cardio Dr tomorrow and I am thinking of asking to see a specilist. Do any of you see secialists or what kind of Dr do you see Quote Link to comment Share on other sites More sharing options...
flop Posted October 27, 2008 Report Share Posted October 27, 2008 Hi, welcome to the forum!sorry to hear that you are battling with the symptoms of POTS but be reasurred that we are a friendly bunch and try to answer everyone's questions. POTS is a dysfunction of the autonomic part of the nervous system, it can happen on its own or as part of other neurological conditions.The racing heart rate on standing that you describe does sound classical of POTS. For most people with POTS drinking water and taking extra salt is an important treatment as it raises the blood pressure. If you already have high blood pressure you may need to be careful to not take too much extra water + salt. The symptoms of swelling/oedema, sudden weight gain and breathlessness do sound like you have too much water on board for your body to handle just now. I would encourage you to see a doctor as soon as possible to get checked out, especially as you are breathless. POTS (like any other chronic condition) takes quite a while to get used to but you will learn what is best for your own body such as how much water is right and how much is too much. Hope you're feeling a little better soon,Flop Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 27, 2008 Report Share Posted October 27, 2008 Welcome! I think Flop is right. Manyof us are hypovolemic, meaning we have low blood volume. Your high blood pressure seems to indicate that may NOT be the mechanism behind your POTS. Extra fluid and salt can worsen hypertension. Be careful! Talk to your doctor. Maybe you could try compression hose instead.Julie Quote Link to comment Share on other sites More sharing options...
pat57 Posted October 28, 2008 Report Share Posted October 28, 2008 Welcome........Are they still using interferon for MS? Is there any treatment? Quote Link to comment Share on other sites More sharing options...
Megan Posted October 28, 2008 Report Share Posted October 28, 2008 Welcome!I see a specialist-a cardiologist. I help coordinate my doctors so that my regular doctor knows what's going on and can do things like give me refills for meds if I need them and my cardio can't see me. There's a list of dr's on the dinet site.I agree about the compression hose. Since you have high bp, they might be a better alternative.Good luck with your appointment,Meg Quote Link to comment Share on other sites More sharing options...
mspatty1 Posted October 28, 2008 Author Report Share Posted October 28, 2008 thank you for your replies. I have tried interfrons but they make me so sick I decided the cure was worse than the MS. I also tried Copoxine but Ihad a lot of problems with that to. I am not on anything for MS at this time. I only take things to help with the symptoms. I am going to see my cardiologist tomorrow for the POTS. I hope I get some answers. thank you Quote Link to comment Share on other sites More sharing options...
Ernie Posted October 28, 2008 Report Share Posted October 28, 2008 Hi,I have a few specialist for the POTS one is the endocrinologist. Quote Link to comment Share on other sites More sharing options...
mkoven Posted October 28, 2008 Report Share Posted October 28, 2008 Maybe you could bring a printout of the "what helps" section from dinet to your doc, to talk about which options might be the most appropriate? Quote Link to comment Share on other sites More sharing options...
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