Kitkat33

Hi Gitte, I Just wanted to let you know you are not alone. I have had POTS for 12 years and have found no real answers and have dealt with seeing my POTS doctor who isn't really a specialist in the area (basic Cardiologist with no POTS background) only once a year too. When I go to see him he seems to hope I reply that everything is all getting better and I can go off my beta blocker, etc. Instead I am continually adding on new symptoms and feel worse each year with no additional care provided. I have seen coutless local doctors too to try and find the root cause of my POTS and have had no luck, they all send me off making me feel like a complainer and hypercondriac. I just submitted an application to go to John's Hopkins and get checked out there by a group of neurologist based on a recent abnormal MRI that I had and also have an appointment to see another neurologist/specialist who will look into my problems as well but, that appointment isn't until 12/17. I am hoping once these appointments occur I will get some more answers. I also have an appointment with a POTS specialist in MD on my calendar for March 31st next year (I guess the wait list is just really long but that is a doctor I found on this board who appears to be highly recommended). I think persistence is key. I tried to ignore my problems and just live feeling awful and being limited for too long! I know with limited energy it is hard to push for better care, but I think that is what we have to do. That is what I am doing now and something I wish I had done years ago. So, if your current doctors are not helping you out I would say even if you have to wait to see a new doctor you should go ahead and do that. That is my plan at least and I have the hope answers and potential improvement will actually come! Good luck and know you are not alone

Hi All, I was just curious if anyone has had an abnormal Brain MRI with enlarged ventricles? I was diagnosed with POTS back in 2003 but have been feeling worse in recent years with additonal/increased fatigue, muscle weakness, bladder issues, and dizziness. I have been going to a number of doctors to find some answers and recently had a brain and cervical spine MRI that came back showing I had enlarged brain ventricles. (I had a MRI in 2010 that was normal on paper so this is a fairly new change) My Nerologist is now sending me to a specialist for hydrocephauls. I guess based on the looks of my MRI it looks like I could potentially have normal pressure hydrocephauls but, this is odd because generally most people with this condition are 60 + and I am 33. So, just curious if anyone on here has had or knows anyone who has had hydrocephauls and POTS. I am wondering if there may be some sort of connection. Thanks!

Hi All, I am new to the forum too and was diagnosed at a local clinic years ago but have not had the majority of the test listed above conducted and I still have a large number of questions about my condition and any potential causes. I also have been feeling very poorly recently. So, at any rate I am interested in potentially setting up a visit at a large clinic. For individuals who did go to a Mayo Clinic or a similar level clinics, how did you go about getting an appointment set up? The current cardiologist I am seeing has told me a simple test in their office basically going from standing to sitting with a heart elevation over 30+ beats per minute is all the diagnosis I need and I have received little support as additional symptoms have come to the table. I was thinking of maybe picking out a doctor on this site listed in my area and trying to get an appointment with him or her and then seeing if potentially they could refer me because right now I am getting little help. So just curious if anyone has any recommendations for getting a similar POTS study/examination? Cskjeie - all the best luck. I would be nervous to but it is great that you are having all those test done and will hopefully leave with a better understanding of your condition etc.

Thanks. I will check it out!

Thanks all! I really appreciate it

Sarah, Just curious, did you doctors find a reason for your low potassium levels or did they just provide the supplement after not finding a specific cause? Kate

Thank you all for your thoughts and input. I will need to check out the doctor's list. I have been dealing with pots and fatigue etc. for years but have had a really tough time these past 6 months. I am tired with no energy every day and with a number of random aches and pains to include new problems with bladder discomfort and constant back aches... just trying to feel better to improve my quality of life. I have seen a number of doctors but none specialize in Dysautonomia and the consensus with most of the doctors I have seen is that I am ok, and just need to decrease my anxiety and change my life style. I have had my calcium and potassium and magnesium tested. My potassium on two test was low, around 3.2 but on another it was fine, 3.8 so my doctor (primary care) concluded no additional test were needed in that area. I was told my magnesium and calcium levels were ok but, am not sure regarding what exactly the numbers were. I went to a cardiologist who did an echo and ordered a stress test that I am going to do next week. The Echo looked good. Although my heart rate laying down was in the 100s and has been much higher when standing (130 +). My blood pressure at my most recent appointment increased quite a bit and was 160/102, I have had blood pressure on occasions around 140/90 but never as high as some recent readings. The cardiologist also ordered some test to check out my adrenal glands which potentially could be the cause of my increased symptoms if anything is found there. I know a number of similar test were run by doctors I saw back in 2003 but, am hoping maybe some answers are found now. I really have been trying to ignore this condition for too long and would really like to find some answers if any can be found. I don't want to also assume everything is due to POTS when maybe something else is causing my recent problems but as of yet, nothing has been found. Thanks again!

Looneymom, Thanks for the input. I did have this symptom more often when I was first diagnosed at 21. Now I am 33 and it seems to be starting again. Glad to hear I am not the only one. Kate

Hi All, I am a new member in the forum but have been living with POTS for a number of years. I was diagnosed back in 2003. Recently, I have been very symptomatic (excessive fatigue, heard palpitation, increased heard rate, sort of breath, etc.) and am nervous that there is another condition going on as well as POTS. I have seen a number of doctors and am going to continue to go but, nobody has discovered any diagnosis other than POTS with no underlying causes. One of my symptoms that I wanted to ask about and see if it is fairly common is muscle twitching after walking. This happened to me years ago but, has started up again recently. After going on about a .5 mile or less walk I have twitching that I can feel throughout my leg muscles. It is happening fairly deep in my leg muscles so, I cannot see if with my eyes but, I can feel it for a number of minutes after walking. So, just curious if this is a common symptom for some on this forum? thanks, Kate