Poohbear

I'm sorry you are dealing with this kind of added stress. Maybe you can take the film somewhere ese to get another radiologist to read it for a second opinion? This is easier said than done but TRY not to worry. Certainly keep a watchful eye on things. It is very common to have cysts and small benign lesions on the liver. Is your liver function on blood tests within normal range? I can understand how upsetting it is for you---especially given your family history. Hugs to you!

Cat Lady, The other thing to remember is that "POTS" is not a diagnosis. It is a description of a syndrome that describes a cluster of various symptoms. All of the autonomic specialists I have ever talked to say the same thing.....POTS is not a diagnosis. It's a description and there are many many reasons (root causes) why a patient can develop POTS symptoms (syndrome). Most patients never learn their root cause and in those cases a Dr will call it primary but that's only because they have not been able to identify the root cause. If they are able to identify the cause then the POTS would be listed as secondary or as "complications" due to X (Primary cause). I know many of the specialists and physicians SAY this but I've learned the hard way that it's not really an accurate statement. Some forms of dysautonomia are potentially fatal--Shy Drager for example. It would depend on the root cause as to whether it's debilitating or truly life threatening.

I'm sorry that you had a bad experience and felt invalidated by this physician!! I can understand part of what he may have been talking about (although I appreciate your not liking his analogy). If you think about this a little bit in terms of people who have panic attacks that may be another way to explain it so that people can understand. For example, let say you are in an elevator and you suddenly feel your heart race. You DO have a physical problem in that moment but your thoughts can exaccerbate the situation. You may think, "Oh no I'm about to die" and your brain may make the connection to all of this taking place in the elevator. Thus, the next time you go to get on an elevator, even if your heart wasn't racing, you start to panic (and then your heart may race). There are many people on this board who started out having "only" medical symptoms but then when spells happened in public or unexpectedly the fears crept in and then they end up dealing with panic attacks on top of the initial medical problem. There are some people on this board who have dealt with agoraphobia because of the medical problem. I'm not saying this is YOUR case and maybe this guy did a poor job of explaining it to you and/or maybe he didn't do enough to validate all of your issues but I can see where what he was trying to explain could (and does) apply to some patients. It can get very complex for some patients because a "POTS crisis" can increase the epi, norepi, adrenalin etc. in the body; those are also some of the same catecholamines that are at work in panic attack. Your body does not know the difference and that is where the mind comes in. I do think there is a lot to be said for the 'self talk' that people can use in the middle of an autonomic crisis and just like anything else.....some people don't need training in those methods and some people do. It sounds like this guy definately did not listen to you which is angering for sure but I do see the point he was trying to make.

Everything I read said the coroner determined the primary cause of death to be pneumonia and the secondary cause was multiple drugs and anemia. Doesn't sound like dysautonomia to me although if she did have dysautonomia it may have made it more difficult for her body to recover from the pneumonia.

I've investigated it before after one Dr's suggestion but after consulting with some top autonomic specialist they were against it. If you have no trouble with tachycardia, blood pooling or hypovolemia then you might find you do okay with it....otherwise it's a great risk as you are pulling large volumes of blood out of the body. Even though it goes back in.....you first gotta pull it out and know that you would do ok with that type of volume shift. Good luck to you whatever you decide.

I actually have a problem that is opposite of yours. I am often dehydrated, I am on IV fluids several times a week to try to keep my fluid levels up. When I have an "autonomic crash" my urine becomes as clear as water even though we all know I am severely dehydrated. My urine will be really dark but as soon as I enter an autonomic crash the urine becomes crystal clear and then right after the autonomic crash (anywhere from 1 to 4-5 hours later) once my body starts to return to it's baseline again, the urine turns dark again. This happens even if I have an autonomic crash while I'm on IV fluids. If I were you I would consult with both a urologist and a nephrologist to see if they have any ideas for you. I've personally found nephrologist more helpful with this type of problem. Not that they were much help but the nephrologist had a better understanding of what was actually happening in my body. What medications, vitamins or supplements are you taking? Have you had your Creatine phosphokinase (CPK) checked during these spells?

Check this link out http://www.irs.gov/publications/p502/ar02....blink1000178902 and then look under "Capital Expenses" I'm not sure you can deduct any portion of the utility bills but might be able to deduct a portion of the cost of the equipment for the year it was installed. I would advise you to consult with a tax accountant or tax attorney re: if you can deducts a portion of the utility bills.

YAY!!! I hope the good trend continues for him

There might be some truth in the above statement for some patients but it's not the only thing that will cause blood pressure drop/increase in heart rate. There are lots of conditions and disorders that could cause changes in heart rate and blood pressure. Also, hypovolemia can be a transient, temporary problem sometimes.

I think the data has shifted over the years and they now know that POTS is really not that rare but it is often misdiagnosed.

You should do a search on Vanderbilt. This topic has been discussed at exhaustive lengths many times. Many people find Vanderbilt to be a good place that offers a lot of support in the research area but go with realistic expectations. There are no new medications out there to date and the study involves the same meds that we all already know about. Hopefully they will be able to find something that best fits your circumstance and needs that helps you but don't get your hopes up too high. The studies they are doing are the same ones they have been doing for years and hopefully in time the research will provide some great benefits to patients but that's not where things currently stand.

Thanks Toddm1960, I have been on L-carnitine; I take a liquid prescription form and have noticed a little benefit from it. The rest of the 'mito cocktail' I have not started yet. I am researching which products to buy, where to buy from etc. I have read that there are compounded liquid forms of the vitamin C so I may go that route with the vitamin C. I'm trying to struggle through the maze of understanding the technical stuff of mito. I understand the basic concepts but I would like to understand more. Maybe when I get all of my final reports that will lead me to better specific information. I'm still healing from the biopsy site too. Things are better but healing seems to be very slow.

This does sound interesting and I would like to hear more too. Based on my experience, it sounds like whatever this is that it has some similar concepts to some of the testing Vanderbilt does. I'm referring to the test where you lay down and they do the various activities....hyperventilating, hand grip, hand in ice while they measure the response of BP and heart rate. I believe they are measuring the same things as this poster is referring to just in a different manner. It doesn't sound like the test described by ana would be as informative for most folks on here because most of us on this site don't deal with diabetes as our cause.

Hi Julie, If you ever decide to pursue the search with your son let me know and I'll help you navigate those options so you can decide the best approach for him and your family. I have no clue how the MCAD stuff fits into the Mito picture or if it even does. Nobody is giving me those kinds of answers. I guess in the moment I'm frustrated because I feel like instead of ever getting to the root cause and finding effective treatments or effective ways to manage things I'm just given more and more diagnosis. With the biggest issues there is no cure and I've not found anything that improves my symptoms enough for me to say my quality of life is any better. You know what I mean? My fight is for my day-to-day quality of life to be improved and nothing has helped much at all or if I find something that helps one symptom it makes another intolerable. For every question I get answered several more develop. That's when I want to crawl under the covers and just sleep (wish I could actually do that), watch tv, read a good book and just try to escape it all. That works ok for short periods of time until I have to stand up or eat or DO anything. I know...."this too shall pass" but I would like for some of this to pass with some good days mixed in there!!

I know there are not many on this site but who here has a confirmed Mitochondrial Diagnosis and how was your case confirmed? I have blood test and muscle biopsy that confirmed the Mito Diagnosis. I'm new to the whole Mito stuff and it's pretty overwhelming. I had no trouble reading and understanding all the technical jargon when it comes to autonomic stuff but for the Mito stuff I feel like I need a biochemistry degree! (although I understand the basic concepts). I keep asking Dr's...."Is the Mito potentially the root cause of a great deal of my medical issues?" Nobody seems to agree...Some Dr's say "it could be" others say, "no, it's just another symptom of some other yet unidentified disease". I do not have enough of the results back yet to know which specific form of the disease I have. I'm interested to hear from others what specific form they were diagnosed with to see if there is any correlation among the population of us on this site between the ANS stuff and the Mito. I read that ANS dysfunction is often a symptom in Mito but my case seems to be very different than what they describe on the Mito site in terms of the ANS stuff; my issues are much more involved than what I read about the ANS stuff on the Mito sites. Sorry if I'm rambling...I'm just trying to understand the Mito stuff and the connections and see what other people here experienced. Has anyone here had improvement with the 'mito cocktail', if so, what symptoms has it MOST helped you with? Thanks, Poohbear

I get these kinds of issues too. I don't think they have anything to do with ANS stuff in my case but like you said....poor posture, tension etc. If you can do isometric exercises for the head/neck and shoulder over time you may get some relief. If you don't know the exercises already, ask your Dr for a referral to a physical therapist and they can teach you some exercises that should help loosen those muscles. If you are spending a lot of time in bed experiment with different types of pillows to see what works best for you. If you can afford massage therapist that can sometimes also help but to be most beneficial it usually requires several visits.

Sorry you had a bad experience. Obviously I can only speak from my own personal experience. To answer your question, Yes, I do inform all of my Dr's of my Diagnosis. I have a LONG list of issues, as you probably do too, so I have found it most helpful to just hand them a print out. In the print out I include a list of all current diagnosis, current medications, allergies, special diet needs, and the list also includes a list of all of my other specialists and their phone #'s. Keeping the above helps for the following reasons: 1-I don't leave anything out or forget something because of being rushed. I review the sheet before printing it, make any necessary changes and then at the top I add "As of January 23, 2010" (or whatever the date is) so they know the list is current. 2-Dr's and nurses love having the print out because it saves them a lot of time (they don't want to talk in depth about all these issues even though they need to know they all exist) AND they don't have to worry about accidentally leaving something out because I've done the work for them. 3-It puts a lot of pertinent information in one place that is easy for the Dr and staff to refer back to when/if needed. In terms of your experience with this particular Dr I can see two sides to this. You have to feel your needs are being met so if you feel that isn't happening then you might want to search for a new Dr. For routine GYN checks your ANS/EDS related diagnosis may not really mean much to them or be impacted by the routine exam. If she does any sort of surgery or procedure for you then she would need to understand your other issues. In terms of hormone issues, If you are starting to deal with menopausal issues that may impact your ANS stuff more but it might not but either way there may not be much she can do about that. Maybe a better way of phrasing it is to say even in the general population there are some women who have an awful time with the hormone changes during menopause and then there are woman who have a relatively easy time so in your Dr's eyes your underlying condition may have nothing to do with the menopause changes nor is it outside of the "norm' experience that many of her patients face. Having said that, that seems to be her school of thought and HER approach. You may feel more comfortable with a GYN who specializes in hormone issues and treats these fluctuations during the entire process of pre-meno. to post meno.. A Dr who would regularly test your hormones and start you on a rx for replacement based on labs. The difficulty in that is that while you are going through menopause your body can be making drastic changes in relatively short periods of time.....which is why some physicians choose not to use hormone replacement until the patient is actually in menopause where the hormones are more stable levels even if they are reduced at that point. Regardless, if you think you want to try replacements at this point to see if it would help you any or bring relief then you can ask your current Dr if she is willing to do all the testing and if she isn't then start searching for a GYN who specializes and has an specific interest in the hormone issues. I have had some exams that caused minor cramping and light spotting that went away within a day or two. Especially as you get older the exam can have more discomfort. Next time you have an exam I would tell them you had this reaction the last time and it may be as simple as them needing to use a smaller instrument next time

Thanks for the replies! Toddm, I think my Dr. is sending my stuff out to Dr. Schoffner. I have had three Dr's recommend I see him (including a geneticist at Mayo) but I don't have access to traveling there (plus he doesn't accept Medicare). I really dread this but we've put it off for years and I really need some answers. Plus, if I get a definitive diagnosis I will have more "objective data" to fight the insurance with to cover some of the medications I need (like I.V. carnitine). Everyone has told me Dr. Schoffner is the best and most well known for the issues I'm having. We'll see.

Here is a link that explains some more about the types of things you are asking and has phone number for who you should contact at Medicare. First, you need to find out from the primary carrier if seeing this Dr would be an in-network benefit that they would cover. http://www.medicare.gov/Publications/Pubs/pdf/02179.pdf

The muscle biopsy is to determine (hopefully) why I am having severe muscle issues. I have severe deficiencies in many of the things that indicate possible mito. disease or some muscle disease (these issues are way beyond the typical issues people sometimes have with POTS or dysatonomias). I already have confirmed small fiber neuropathy from skin biopsy but this muscle biopsy is for something totally different that a skin biopsy will not give answers to. Yes, the needle biopsy would be easier to recover from....it simply isn't an option for the tests that need to be run in my case. Needle biopsy is not sufficient for mito. testing, as well as it's not sufficient for some of the other diseases they are trying to rule out. I asked about that some time ago because it would be much easier to recover from. Bottom line I have to have "open muscle biopsy and fresh (not frozen) specimen" I am concerned about the recovery mostly because I already have trouble walking sometimes because of muscle issues and it takes weeks and months for a simple pulled muscle to heal in my case. I can't imagine how painful healing will be when they take a chunk of a muscle out or how long it's going to take me to heal from it.

I am a little unclear so let me first try to clarify 1-You have primary insurance through your husbands employer? Yes? 2-Do you know if the Dr you want to see accepts your husbands insurance and/or do you know if that insurance company would consider this Dr and "in-network" benefit or "out-of-network"? Based on what I think I understand you saying, these are the steps I would take.... 1-I would call the primary insurance carrier and see if this Dr would be considered in-network or out of network. I would also ask them if I was allowed to file the claim myself if the Dr's office makes me pay all fees up front (that should be allowed but you may have to get special forms from them). Also, tell them that this Dr does not file Medicare; ask the primary insurance carrier if THEY can file the Medicare claim for you after they have processed the claim on their end. 2-If Primary Insurance says they can't file the secondary Medicare claim for you then Call Medicare --remind them they are secondary payer. Ask them if you see a Dr. whose office says they do not file Medicare if you are allowed to submit the claim yourself AFTER your primary insurer has paid and ask them if you need special forms from them to submit the claim yourself. Make sure you get an address from Medicare where to send your claim to and/or ask if there is a fax number you could use to submit the info. 3-If you get the answer from the above sources that you can file the claim yourself call the Dr's office back. When they ask what insurance you have ONLY give them your primary insurance information. I wouldn't even mention that I had Medicare as secondary. 4-If you go this route---make sure you get ITEMIZED bills for ALL services and fees the Dr' provides (this means that sometimes you have to call the billing office and ask for an itemized bill if all they send is a statement). If you submit the claims to medicare yourself make sure you make copies of all EOB's from the primary insurance carrier to submit along with the bills. Make sure you keep complete copies of all information you send to Medicare. ***To answer your question about the "logic" to this. It could be several things #1 Many Dr's offices are not used to Medicare being a secondary payer and don't understand the rules about it. #2 If the Dr does not file insurance then they probably don't have the ability to file electronic claims with Medicare. Medicare has made some changes over the last few years and I believe one that is fully implemented now is that in order for the Dr to receive payment from Medicare the Dr has to be "signed up" and have access to their electronic system. When they are telling you they don't take Medicare patients I think they are basically telling you they don't have an agreement to file with Medicare. It would be a big issue for you if Medicare was primary but in your case I think I would only tell them about the other carrier. The majority of people have Medicare as primary and another carrier as secondary or supplemental policy and most Dr's offices get confused on how to handle medicare as secondary payer. Hope this helps in some way

I did a search but couldn't find the information I was looking for. Has anyone here had an open muscle biopsy? If so, can you share you experiences with it....particularly how bad your pain was afterward and how long the pain lasted. I'm a little concerned....read on a general web search that people were given narcotics for pain and I don't do well with ANY pain medications. I've also read they had trouble walking for days afterward etc. I read that you should not do any major activity or strain the muscle biopsied for a week or two after. I'm expecting to have issues with the dressing too as I am allergic to all adhesives. They will be using dissolvable stitches and I do fine with those. Just a little anxious and wanting some input. I can handle anything as long as I know what to expect but the Dr's office is being vague---just telling me I can't drive and that further instructions will be given that day. I live alone and don't know if I need to plan on staying with someone a day or so or if I will be fine but just in pain. Thanks for any input or sharing your own experiences!

I've had a similar experience before with elevated troponin. They should be repeating it every few hours and as long as it's not climbing by leaps and bounds it shouldn't be anything to worry about. There are other things that can mildly elevate troponin---it could be from your heart racing so much or it could be from another muscle strain. Hope you get to feeling better soon. I've done a stress echo before simply by standing up. First time the staff had seen simply standing as a "stressful exercise" but I was well above my target exercise rate.

If you are referring to Vanderbilt it will depend....if you go outpatient then it's a 1 to 2 day thing and you will get billed for all testing, consults, labs etc. If you go the inpatient research program it's 10 days but you have no expenses (other than the expense to get there) and you will get more insight into what medications and treatment options might work for you. You will still have to have referral and it still takes a while to get an appointment.

Yes, they take the results of the data they get from the patient and aim to provide a treatment plan based on those results. There is some information they keep to themselves (like some of the genetic testing stuff) but postural studies, medication trials etc. you are given info at the end of your stay (or you can request the records) that shows what medications you were given on which days and it also shows your heart rate, bp results for each of those studies. It will list your baseline and then various intervals throughout the 4 or 5 hour daily medication trial.