bebe127 Posted May 22, 2013 Report Posted May 22, 2013 Hoping everyone is having as symptom free day as possible.As many of you know I was diagnosed with "probably POTS" back in 2009. I've never been told what type of POTS I have and it's always been in the back of my mind that I might not have POTS at all. As a person that spends the majority of time at home (and lots of that time in bed on computer) I read and try to research what might be wrong with me (I should probably put that energy and effort into vacuuming ). As I'm reading, I'm noticing that I have many symptoms for other things, and I suspect that many go through this too as so many disorders overlap and such. What sticks out to me though is I have many more of the symptoms for other things and less of the main symptoms for POTS. Mostly, I feel like I have the flu, menopause, and a hangover simulaneously, daily.Symptoms I have on a daily/frequent basis are:tachycardiabradycardiaspikes in bpheadaches (sometimes migraine-type)tinnituspalpitationschest pain/discomfortbruise-like pain/discomfort in sternum, under left ribanxietyweight loss (over 4 year period)little appetitediahreahnauseasleep issuestremulousnesswaking with shaky feelingnight sweatsperiods of cold/hotvision issuesthe ever popular brain fogThat's most of them anyway. What I don't have is exercise intolerance (I'm just lazy in this area ), OI, don't faint, I don't have low bp upon standing, don't have blood pooling, and don't know if I have low blood volume (as no one has ever checked). What I've noticed is that with the symptoms above, and the reading I've done, it seems like I could have any number of things wrong (hyperthyroidism, pheo, MCAS, hyper POTS to name a few). Does anyone else go through this? I feel like, obviously something is wrong and no dr. has been able to pinpoint anything other than to say I "probably have POTS" after a positive TTT back in 2009.I guess my question is, do any of you go through this and how do you approach a dr. without looking/sounding like a hypocondriac or crazy? I always read that we have to be our own advocates and that's what I think I'm doing, but part of me thinks too, is it just me with too much time on my hands? I guess anyone could plug in numerous symptoms and come up with myriad possible disorders. I just don't know what to do anymore.I've been to dr. after dr. that have just basically concurred with the first dx. and went along with that. I've never been tested for anything else nor has any dr. ever suggested testing for anything else. It's taken me two years now to get back some semblance of respect and trust for dr.s (since I've had such negative experiences over the years) and I don't want to go in and suggest and ask for all these tests only to come away with nothing or worse yet, get referred again to a psychologist (been there, done that, did not help).I'm going to my GP next week. He's been treating me for POTS for the last two years with Metoprolol and Xanax. While I think I have improved ever so slightly, I don't know if that is due to medication, or that I'm just getting used to feeling this way, or what, and I still don't feel well at all. Everyday is a battle. I can't help but think that something else might be going on.I guess, I just can't accept that this is going to be my life from now on. If anyone has any suggestions or advice, I'd be grateful.Be well,BebeP.S. sorry this is so long... Quote
abbyw Posted May 22, 2013 Report Posted May 22, 2013 I don't have a good answer, but I just wanted to let you know that I can relate 100% to your post! Quote
BarbaraC Posted May 22, 2013 Report Posted May 22, 2013 Hi Bebe. I am so sorry you are going through this. I remember this was the worst part of getting this illness - just getting diagnosed. It took me almost 2 years to be diagnosed and I stopped counting the wrong diagnoses after about 30. I, like you and many others, was eventually stuck in the psychiatric bucket - because if the doctors can't figure it out, there must be something wrong with me mentally. There are really only two pieces of advice I can give you. 1. Don't give up - you know your body better than any doctor does and you do have to be your own advocate. If a certain doctor doesn't respect you, then you need to move on and find one who does. It may take more time, but it is worth it to find the right doctor who will be your partner. 2. Try to find someone who can be an advocate for your health too. When I first got sick, my mom came with me to all my appointments. Now my husband does. Sometimes a doctor will listen to a friend or family member explaining your fatigue or brain fog more than he/she will listen to the patient. Sometimes the symptoms have more validity coming from a third party. Having a friend or family member to deal with getting earlier appointment times, problems with insurance, etc is so much help too. Don't be afraid to ask someone for help with this. Usually our friends and family want to help but just don't know what to do. I hope that helps a bit! Quote
bebe127 Posted May 22, 2013 Author Report Posted May 22, 2013 Abbyw, Sorry you can relate so well BarbaraC,Thanks for the response. I am going to try to keep going. My husband goes with me to all my appt.s, and even though he is so great, does so much for me and the kids, has taken over much of what I used to do, etc. his perspective is basically "everyone is going through something". This is certainly not to say that he is insensitive at all. I think he is just tired of seeing me struggle day after day and not being able to do anything about it. When I go to him with "maybe I have this", I get, "well, ask the dr. next time we're in". I don't have friends or family down here to help, just my hubby and two teenagers. I have friends, but they wouldn't be able to help as they have their own issues and families to deal with.Thanks for your suggestions Quote
looneymom Posted May 22, 2013 Report Posted May 22, 2013 Babe I hear you loud and clear. I had a problem about 3 months ago with our family physician. He did not want to rerun some blood work that the cardiologist had requested to be done. I have learned that it is better to run it through the cardiologist first before I mention it to the family physician.Since you already have a doctor treating you for the POTS, I would ask him if he would explore other things that might cause these same symptoms. That's what the cardiologist is wanting to do with my son. He has told me that the first line of medications my son has already tried, should have kept him going. So for that reason, we are going to start exploring autoimmune disorders, mcas, AAG, ect....From what I understand, finding the underlying cause of POTS can be an extremely long process. You sound like you are a fighter and want your life back. Charge on and find a doctor who wants to help you. Be truthful and tell him that you want to feel better than what you do now. If he says this is good as it gets than find another doctor. Positive doctors are priceless. Quote
MightyMouse Posted May 22, 2013 Report Posted May 22, 2013 I actually just went through this process with my gastroenterologist. I can only tell you what I did and that it worked for me--doctors are humans too, so each may respond differently. I have strongly suspected mast cell problems for years, but doctors have pretty much ignored all my previous efforts to go down that diagnostic path--I think, mostly, b/c they themselves don't know the condition well enough to identify it easily.I had gone through a series of tests with my gastro, who I've only been seeing for a year now (I had one prior for about 15 years but felt I was going no where) to try to figure out why I was having break through reflux even though I'm on enough a ton of meds. *Theoretically* I shouldn't have any inflamation of any tissues, stomach or otherwise, and yet, I still do. 2 nexium a day, 50 to 100 mg of benadryl, singulair, zyrtec and symbacort. I explained that I was concerned that my tests still showed inflamati on of the valves, the stomach lining, and duodenum. I also told him that my sinus doctor describes my sinus linings the exact same way--persistent inflamation. I brought an article with me, told him that I was aware of a significant subgroup of people with my collagen problems that also have MCAD or MCAS. I told him I wasn't looking for a cure, but was looking for an explanation of why I have so many treatment resistent problems--and I was looking for an explanation that took the big picture into account. I then asked him what he thought of my theory... I showed him the diagnositic information in the article and had highlighted for him in yellow all of the items that were a total match with me, including treatment resistant high cholesterol, multiple environmental allergies, and history of hives to anaphylaxis and hyper reactivity to medications that seems to go in cycles of high response to no problem whatsoever. He sat for a minute and said, "you know, I'm not that familiar with this so I'd like to ask that you give me a few weeks to read this and consider it--but I think your request is completely reasonable." I calmly said thank you and I would give him the time, but on the inside I was doing a little victory dance.Not sure where it will all lead --perhaps no where, but for a little while I felt like I had some control of the direction the ship that is my body is going.Good luck, hope this helps you in some way...or helps someone. Quote
bebe127 Posted May 22, 2013 Author Report Posted May 22, 2013 Thanks Looneymom,I don't even have a cardiologist presently. The first one I saw in 2009 (before being dx. with POTS) told me I had high bp (numbers ranging in the 135/high 90's area) and high cholesterol (numbers ranging about 212) which in fact aren't really high numbers to begin with. She put me on Norvasc 10mg. and Niacin (can't remember how many times a day) and a week later I was in the ER. The EP I saw in the ER said that I, in fact, did not have high bp or high cholesterol and to stop taking the meds since both had side effects of tachy and arrhymias (however you spell it). He is the one who put me on a 21 day monitor and did the TTT which I tested positive for. That's when he said, you "probably have POTS, drink more water, eat more salt and go live a normal life." He gave me a packet of info from this website about dysautonomia. That was the end of him, not on my part mind you, he told me that POTS was rare and that many doctors don't know about it and/or treat it and he wasn't one, and he couldn't even refer me to someone that could help me.I saw another EP later, in the next county up. He was supposedly a specialist in POTS. He did nothing but put me on Celexa which I had a terrible reaction to, he told me to stop taking it. I saw him some 4 months later for a follow up where he told me that all my symptoms had nothing to do with POTS (even though many of them came directly from the packet the original dx. dr. gave me). He ended the visit suggesting I find a dr. closer to home and look into seeing a psychologist.My pediatrician referred me to my current GP telling me that if I had cardio issues, he's the dr. I should see. I've been seeing him since. He seems to have a basic knowledge of POTS and told me that he treats about 5 other patients with POTS. He did refer me to a cardiologist, but I emailed him first to ask if he had knowledge of POTS and/or treated anyone with POTS and he told me, no, so he got scratched off the list.For the last two years I've been on my meds, but still just don't feel well. I haven't had the energy to pursue the whole thing again, but now I'm just sick and tired of being sick and tired and I am now at a point where I need to find answers.Hopefully, he will be receptive to my questions and concerns. Here's to hoping!!I hope you son is doing better these days Be well,Bebe Quote
bebe127 Posted May 22, 2013 Author Report Posted May 22, 2013 Thanks MightyMouse,I have actually been reading articles on MCAS and highlighting all that pertain to me (also other articles as well). My hope is to do the same type of thing...go in an ask if this is something we could look into. We'll see how it goes.To my knowledge, I've never even had my epi or norepi checked (possible inicator of hyper POTS). I just want to move forward in finding out what exactly is wrong. At this point (and I truly mean this second in time, don't know how I'll feel tomorrow or next week) I truly believe there is something not right. I'm not looking for a magic pill or anything either. I just want someone to help me to sort all this stuff out. Maybe I truly don't have POTS and if I don't, then I want to find out what is wrong and go about seeking out a different/new treatment plan. I just want my life back. I refuse to sit back and accept that this is my life now (this might be denial talking). I have a NEED to find out what is wrong, and I think I'm at a point now to where I might be able to deal with the next step in this really poopy journey.Thanks again Be well,Bebe Quote
Hope Posted May 22, 2013 Report Posted May 22, 2013 Has your doctor run a lot of blood tests? Like for Lyme, checked your ANA etc for any autoimmune causes. Sorry, bad brain fog today. I'm having a hard time deciding if what I'm saying is making sense. Your list is very similar to mine, minus about 3 and then I have some to add. =) You're right, those symptoms can come from so many different things. They can't determine my underlying cause (although I'm pretty sure I know what it is) and I have had just about every blood test under the sun, so I know there's a lot they can check for.Just curious, did your symptoms come on gradually or did you get hit suddenly? Quote
bebe127 Posted May 23, 2013 Author Report Posted May 23, 2013 My doctors, to the best of my knowledge haven't run any other blood work besides routine stuff. Two years ago when I began to see my current GP, he tested me for menopause and checked my thyroid, but that was it (aside from routine blood work) and all came back normal as far as I know. Never been checked for Lyme or had ANA done for autoimmune. It might sound stupid, but I don't think we have lyme down here, I live in South Florida and to my knowledge we don't have deer ticks. I've read that dog ticks don't carry lyme (unfortunately we've had issues in the past with this). I will ask my dr. anyway just to see. I am also going to ask him to do the ANA test for autoimmune as well.I know this sounds silly, but I really don't know if this came on gradual or quick. My whole story is on my blog (link below, not to give a plug, it's just kinda a long story). The short of it is, in 2009 I told the dr. that I had been experiencing heart/chest pain/discomfort and my left arm would feel funny and cold on the inside. He told me "You're too young for heart problems" and dismissed the whole thing. That summer I went to my GYN who told me that my bp was elevated, but not to worry, check it at CVS periodically and if it remains elevated to see the dr. Then, I began to notice that my heart rate would go up while doing non exhaustive things like making the bed (hr would go up to 120). All this time though, for the most part, I felt fine otherwise. In the fall of 2009, I decided to go to a new dr. They gave me an EKG and said it was fine but referred me to their cardio as my bp was elevated and my hr shouldn't be doing what it was doing. Saw the cardio, she said I had high blood pressure and high cholesterol and put me on Norvasc and Niacin. She also gave me a treadmill stress test that I passed with flying colors, didn't even break a sweat and hr went up to 170 while running. Still, I felt relatively fine. Began the medicine and a week later was driving somewhere and out of nowhere had a panic-type attack. Had to call EMT's, they said it was anxiety. Called the cardio to ask if the medication had caused this, she said she didn't think so. Next morning I was in the ER with same panic-type symptoms (original cardio that put me on meds for high bp didn't even bother to come). They did a bunch of tests, CT, US and all came back fine. ER dr. and EP dr. said that I did not have high bp or high cholesterol and told me to stop meds. EP prescribed a 21 day monitor that showed that my heart rhythm was fine it was just my hr that wasn't. Dr. told me it was unremarkable, but I might have SVT and scheduled me for a TTT. Tested positive on that and that's when he dx. me with "probably POTS" and referred me to a neuro. Went to the neuro, nothing resulted from that. Saw another EP for second opinion, he was a total you-know-what and told me to seek another dr. closer to home and look into seeing a psychologist. That's basically where it ended (as well as my life as I had know it) until I began seeing my current GP.Thing is, is that every dr. I've seen has just taken the first EP's dx. and gone with that. No one has ever tested me for anything else or tried to find out why or if there is an underlying cause. It has only been in the last two years that I've actively started to search and read bunches to try to figure out what is going on with me. I think I'm finally to the point where I just need answers and I'm going to try to get some. We'll see how it goes.Thanks for your reply Be well,Bebe Quote
Hope Posted May 23, 2013 Report Posted May 23, 2013 Ugg! How frustrating! It seems like a lot of people here get good results from the mayo clinic, or Cleveland clinic etc. I don't know what is in Florida. I haven't come up with the strength, energy, and courage to do so myself, but my cardiologist said if I wanted a more definite diagnosis I need to head to Toledo to see Dr. Grubb. He said it takes a year to get in and see him though. And for me Toledo is only really about 2 hours away, but I haven't yet made an appointment. Each doctor just has their limits on what they can do like everyone else so it's important if your insurance allows to keep searching for answers. I hope you find some answers! Quote
bebe127 Posted May 23, 2013 Author Report Posted May 23, 2013 Thanks! If I lived that close to Dr. Grubb, I'd be there in a flash I think Well, after the year-long wait that is!! Of course I understand about insurance and whatnot though. Down here, there is nary a dr. that I have found that even remotely has any more knowledge about POTS/Dysautonomia than I do. We have a CC in the next county up, but I called or emailed, can't remember which, a few years ago to inquire about their knowledge of POTS. Brain fog keeps me from remembering the outcome, only to say they must not have impressed me, because I never did go. I might have heard of some negative experiences too along the way.I did just saw on FB about Doctor a few counties up from me (about 2 hours away) that is a concierge dr. (gotta look that up), anywho...he KNOWS WHAT POTS IS AND HE EVEN TREATS IT!!! Can you see my excitement??? I'm not going to run right out to him, but it is comforting to know that there is a possibility that there is a knowledgeable dr. out there and I don't have to travel to Ohio to see him.Be well,Bebe Quote
Joann Posted May 23, 2013 Report Posted May 23, 2013 Bebe, I think the one POTS doctor that has Pots, the one on the Changes video is in Florida. Randy Thompson?Also,Hope, Dr. Grubb's wait list is about a year long. His assistant Beverly's wait list is around 7-8 months. I have been told that Beverly has been with him for years and is very good, and consults with Dr. Grubb on your case. Once you are a patient follow up appointments are not as long a wait. Now, this is what i have been told. i am on the wait list for Beverly and I don't know yet how long it will be. They schedule one month at a time and they are on July/August right now. So I am figuring it won't be til fall. I wish I had called them in the beginning. Remember you can always cancel an appt. To get on the list, you have to first fax/send your tests you have already had done. I faxed what i thought was important and will bring the rest. Also if you are close enough they note it and will put you on the cancellation list, so if there is an opening they will call you. I am about an hour a way, but they also they have very few cancellations. Which makes sense, waiting that long who would cancel? The very few that get better on their own, or those that find out they have something else in the meantime.I have been to CC recently and am working with their doctors, the only thing is so far they have not been able to help me. I think because I do not have the "normal" POTS. I think hype pots is a possibility and it doesn't seem like they deal with this as much. But I am still working with them and hopeful they will find out at least some of my problems. i have some friends that I have met through this site and others and most have had very positive results at CC. I had one friend who was an exception, but it may have just been that one doctor that she saw. Quote
bebe127 Posted May 23, 2013 Author Report Posted May 23, 2013 Joann,Yes, I've heard of Dr. Thompson and have heard many good things about him, although making appt.s can be hit or miss. Not sure if there is a huge wait time, but have heard that sometimes when an appt. is made it might have to be cancelled last minute due to his illness. Just found out about a dr. that is about 2 hours from me that treats POTS. I'm in the process of asking the forum peeps if I can post his website on here. He's a concierge dr., but looks promising. I'd rather travel 2 hours than have to travel 9 hours only to have the appt. possibly cancelled.Thanks for the suggestion Hope you are feeling better these days.Hugs,Bebe Quote
HopeSprings Posted May 23, 2013 Report Posted May 23, 2013 I have a thought. I don't know if you want to go this route, but in South Florida there is Dr. Nancy Klimas who treats and researches Chronic Fatigue Syndrome. She knows about POTS because a lot of CFS people also have POTS. I can't guarantee that you won't walk out with a CFS diagnosis, however - lol. Especially since you say you feel like you have the flu. Anyway, she seems really nice and smart and if she wasn't so far away, I would love to see her myself. She seems like the type who would be open to testing for different things, looking for underlying illnesses etc. If that other Dr. doesn't work out, maybe it's something to look into.http://www.nova.edu/nim/ Quote
looneymom Posted May 24, 2013 Report Posted May 24, 2013 Don't give up on finding a good pots doctor. When I think back to times before my son was actually diagnosed with POTS, he was almost diagnosed with ChronicFatigue Syndrome. He had spent 9 days in a children's hospital and on the last day the cardiologist did the tilt table test. They were going to diagnose with CFS until the TTT was positive. He had all the symptoms of CFS and he looked as white as a ghost at times. His symptoms would have reminded you of the flu.It sounds like your symptoms have came on gradually. Did you have a virus of flu before your other symptoms came along? Your case sounds as complicated as they come. I would encourage you to find a good POTS doctor and one that has a nurse line with email available. Email has help the doctor understand my son's health condition and has given him clues about what test might need to be ran to unravel his cause of POTS. Quote
Batik Posted May 25, 2013 Report Posted May 25, 2013 How do you know he doesn't have CFS or ME, though? It's very common to have that together with POTS. Considering what a dangerous medical condition it is, this is something you'd want to find out. Quote
bebe127 Posted May 26, 2013 Author Report Posted May 26, 2013 Looneymom,You are such a great mom and really seem to take such good care of your son. I hope you get some answers for him and he can get on with some semblance of a normal life.My daughter (16) too has been having some of the same issues as me. She unfortunately has other congenital heart issues and we just went in to see her ped. cardio. I didn't mention at first that I had POTS, as I wanted to see what her dr. said. She in fact, said that my daughter has dysautonomia (didn't use the term POTS), that's when I piped up and told her part of my story. The cardio said that many times it runs in the family, said that this is the age when it usually begins, and told my daughter to drink lots of water. We didn't go into too much detail about the dysautonomia though because they saw something odd on her routine sonogram that has the dr. worried currently. She took my daughter's sono results to a cardio conference at our Children's Hospital and put her on a 30 day monitor (she is currently hooked up and not liking it). She doesn't seem to have all my symptoms (PTL) but she experiences tachy after hot showers and general malaise at times among a few other things. She really is a trooper and refuses to let it stop her. Currently she is worried about this other issue dealing with her congenital heart issue and having to go the the Children's Hospital for more tests. Her dr. wants her to get an MRI in the near future, we are just waiting on the call for them to schedule it. She's been fine as of late, not experiencing many symptoms.I on the other hand feel that my issues came on rather quickly with the panic-thing in 2009. I might have had other symptoms over the years that I glossed over because generally, I felt relatively healthy prior. I didn't have a virus or flu before this all hit. I did have MRSA back in 2000, but I don't know if that had anything to do with this. It's really only been after my dx. that all these things came together and I've been going downhill since. I am truly thankful that I can still do many things and I try to push through for my family's sake. I just want my old life back. I'm tired. I have to strategize everything I do, all the time. If I teach a class on Friday, I know that I cannot do anything else that day. If I do laundry one day, I know that I can't vacuum the same day. My husband always asks what is on schedule for the day and quips "make sure you don't wear yourself out, so there are some spoons left for me." Hopefully, with this appointment with the GP at the end of the week, he'll be receptive to some of my questions, concerns and suggestions. We'll see what happens. If not, I do have other dr.s I can fall back on and try to see them. Trouble is that they will be new dr.s that I have to start all over with. Oh well, I just want to get better, so I suppose I'll just have to do what I have to do.Thanks for your respose Best wishes for you and your son!Bebe Quote
bebe127 Posted June 2, 2013 Author Report Posted June 2, 2013 Well, my GP appointment was a bust. I took in my binder with all my info, test results, articles, symptoms...you name it. The doctor wasn't all that interested. Don't get me wrong, she was a nice lady, but has a very limited knowledge of POTS. I didn't see my normal GP. OMG, I can't tell you how frustrated I am.Stick me with a fork, cuz I'm DONE!! I went in to get my Xanax refilled, which she did, but then I told her I had some questions about my POTS and recent symptoms. I expressed to her that I don't have many of the "tell-tail" symptoms of POTS other than tachycardia (which by the way, is certainly not my biggest concern). I told her of my suspicions that there might be something else going on, like autoimmune issues and could I be tested for that. She looked at me and told me I didn't have autoimmune issues. I asked her how she knows if I've never been tested for anything. She briefly looked at my last few years of labs (which are all routine labs mind you) and said that something would've shown up on those. She advised me to keep hydrated and cool and reduce my stress. REALLY!? So I told her that I guess I am just destined to live my life feeling crappy every day. She didn't have a response to that. I gave her my neatly typed word document table consisting of all my symptoms, delineated by frequency. She glanced over it and gave it back with no response. When I informed her that I wanted to know what type of POTS I have (if in fact I even have it), that maybe there is a different treatment if only we knew what we were dealing with. She said since I have tachycardia and all other heart tests were normal, it's safe to assume I have POTS. I felt like saying, “No kidding, my question is what type?" She would have none of it. She told me we'd look at my blood work results during the next visit (in 6 months) and go from there. Apparently she missed the part where I've been dealing with this for four years now.My husband was with me and I was near tears, but held them back. To my surprise, after the visit, instead of saying, I told you so, you'll just have to live with it, he told me that the next step is to ask our daughter's cardio for a referral to a cardio or EP that specializes in POTS/Dysautonomia (since she recognized it in my daughter by just reading her symptoms). I feel so done with it all at this point, I don't even know if I want to even consider seeing anyone else. I feel like I will just have to go on pretending that life is just freaking dandy and if I ignore it long enough, it might just go away.So much for my time and effort in compiling my notebook...I can only hope that it doesn't take me 2 more years to get up the courage to seek out a dr. that is willing to listen, have compassion and at least attempt to help me. Quote
MightyMouse Posted June 2, 2013 Report Posted June 2, 2013 Take a deep breath and let it go--because you always must remember doctors are just human, with their own strengths and failings. Move on until you find a doctor you trust and work well with. It has taken me years... okay sadly, 2 decades... to find mostly doctors I trust. I still am not so impressed with my GP, but at least she takes my concerns seriously and is willing to do what I ask--but she's not made herself better informed about my problems, so I remain the expert in that area--I do give her credit for recognizing that I know far more about autonomic function than she does...but when I'm in crisis, it's disconcerting to have to be the one thinking about treatment when my brain is functioning at half steam or less.kick to curb and move to the next choice... lather rinse and repeat until you get what you need Quote
HopeSprings Posted June 2, 2013 Report Posted June 2, 2013 What Mighty Mouse said and also, a regular GP isn't usually going to know about POTS "types." I mean... you can try by showing articles etc, but this will likely just lead to frustration. I think your husband is right - if you want to get into all of that you need to see one of the few specialists who has this knowledge. And for her to definitively say you don't have an autoimmune illness without testing for any of them ... I don't have words. Please don't give up - just move on. ((hug)) Quote
bebe127 Posted June 2, 2013 Author Report Posted June 2, 2013 Thanks Mighty Mouse!!I will ask my daughter's cardio when we see her next, probably some time in July. Hopefully, that will give me enough time to chillax I do know that dr.s are only human, but once in a while it sure would be nice to be taken seriously, at least an open mind to look into things and not just rely on basic blood work. Seriously, the dr. just looked at me and said, "I can tell by looking at you that you don't have autoimmune issues." REALLY??!! Just the good ol' "You don't look sick" coming to bite me in the butt, I suppose.I guess I should feel grateful that while feeling like total poop, I still "look" great ! LOL!! Quote
bebe127 Posted June 2, 2013 Author Report Posted June 2, 2013 Thanks Naomi I'm going to try to keep on keeping on. Honestly, I don't know what I'd do without my husband! Quote
flatout Posted June 8, 2013 Report Posted June 8, 2013 Bebe, I don't know if this is possible with you, but if your daughter has POTS type symptoms, you might see if a pediatric cardio will diagnose you. I am in my 50s and got dxed by a pediatric cardiologist, the whole nine yards and found out I had HyperPOTS. It turned out the doctor had an office less than a mile from my house the entire time. So you never know where the help will come. Sometimes when a door is slammed, another one opens.... Quote
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.