@xchocoholic
Great news. I'm curious about how this lines up with what Dr Cheney says about pwcs tho. Not that I'm a Cheney expert but I thought he said the results of a standing echo showed heart problems.
I want to clarify that even though I have been researching Cheney and this procedure, I am in no way an expert on him or how he would interpret my results. I have never met him and he knows nothing about my specific case so I don't want to mislead anyone. The problem I encountered in my research on Cheney was that he gives a lot of speeches and anecdotal evidence but does not publish studies with statistics.
This is not a criticism of him as his focus has been on direct patient care and trying different medications. It's just that in different speeches that he gave that I read, he quoted different numbers as to how many of his patients had diastolic dysfunction and how he assessed this. It also appeared that his patients with DD, had been ill for a longer length of time than I have so if I were to repeat this test in 5-10 years (assuming I am still as ill) then I may fit into his description. But I really do not know!
Fwiw, from my experience, dysautonomia and me/cfs diagnosises can be used interchangeably by some doctors. Since me/cfs can be a wastebasket dx, dysautonomia can be overlooked and the impact is under appreciated. I dx'd my own POTS because no one had looked even after I was consistently positive for OH since 1992.
In my case they are not being used interchangeably. My cardio simply does not know anything about ME/CFS and was the first to admit this himself. He did not understand the role that a virus could play in ME/CFS or in dysautonomia until he spoke on the phone with my ME/CFS doctor. He viewed my issues through a cardiac lens which made sense and really is what I wanted him to do b/c if I had a separate cardiac problem (which seemed unlikely to me but of course possible) then I wanted to find it and know.
My ME/CFS doctor of course saw the bigger picture which is that I had a viral re-activation of EBV and VZV in Jan 2013 and I have progressively gone downhill ever since. My body lacks any ability to create energy on demand and I have a clear metabolic and mitochondrial issue. When I over-do it (such as walking for more than a few minutes, or trying to do a load of laundry, or any exertion, I have severe PEM.) My NK cell functioning is only five (and my CFS dr said it should be at least 50, if not 100) so my immune system is not able to fight the re-activation of EBV on it's own.
I constantly felt a "Sickly fatigue" in which I literally felt as if I had mono all over again. I felt feverish alternating with freezing cold chills and then burning hot. It wasn't until I started on Famvir that this sickly type of fatigue disappeared and now I have a more general fatigue. My body still cannot create energy on demand and I have to operate within a very strict energy envelope or I get PEM.
I have aggressively treated some of my other symptoms such as the GI disturbance which prior to working with my former ND involved constant almost 24 hour nausea and alternating diarrhea/constipation. With a restrictive diet to reduce inflammation, two probiotics, digestive enzymes, several months of GI repair powder, etc, my gut has really healed so I no longer focus on this symptom but for over a year it was brutal.
My other main symptom, which has taken a back seat due to the cardiac/autonomic stuff, is that I continue to have severe noise intolerance. I can no longer listen to music (which has been soul crushing to me as I used to go to several concerts per month) and I can only focus on one conversation or sound at a time. Anything else sounds like a wall of televisions in a store and I don't know where to put my attention. I can only read if there is total silence and need to wear noise canceling headphones. I also can no longer tolerate smells or odors and everything is much stronger for my brain to process than it was prior to getting ill.
Then I just have a variety of weird symptoms like constant unexplained bruises on my legs and calf pain, headaches, sleep disturbance (which the last few nights was really bad again) but in general I have been able to greatly improve my sleep with the right combination of meds and supplements, etc.
You clearly have dysautonomia and dysautonomia can have several triggers including viruses. Did you get the chance to post your questions on Dinet ? The last time I was there, they had some informed members there. It was common for members to have been dx with me/cfs.
I have not had a chance to look at Dinet yet but it is still something that I am planning to do. I really want to get a sense of which meds are being used over there as my cardio wants to to try Droxidopa vs. Midodrine.
I hope this doesn't sound argumentative. I don't remember where but I've seen people post recently that they view someone asking them questions as being argumentative.
Not at all and I do not ever mind people asking me sincere questions. I'm not sure if I know which post you are referring to, but if I do, it had nothing to do with you!
I'm just trying to understand this from a medical viewpoint. From my experience, Me/cfs can be a wastebasket dx and patients have to find their own real diagnosises.
I agree that it is a wastebasket diagnosis and after four doctors (former PCP, former ND, former cardio and my current Endo) all told me I had "CFS" I traveled to see a specialist at OMI who performed extensive blood testing and a thorough history and exam and said that I was a classic case of ME/CFS with no doubt in his mind. He said that a big part of ME/CFS is a "viral re-activation due to immune system impairment" which is exactly what I had.
Believe me, I would like it to just be "POTS" b/c sometimes people with autonomic issues can even exercise in a seated position but sadly this is not the case for me. Any exertion, even seated, causes me tachycardia and my initial tachycardia was occurring in my sleep up to 170 bpm. My biggest problems have been with shortness of breath, chest pressure, low BP, and low blood volume.
The all encompassing issue is that I can no longer create any energy on demand for even the simplest task like cutting vegetables while seated at a table. Trying to do so causes severe fatigue and shortness of breath. My arms are also very weak and if I force myself to use my arms, I end up with neck and shoulder pain and headaches for days. I just hate to use the word "fatigue" b/c I feel it minimizes what I am going through which is total body exhaustion or the ability to regulate the most basic body functions like my BP and heart rate.
I hope that explains things better and I don't mind at all that you asked. If I don't answer right away, it is only b/c I (hopefully!) have been able to go back to sleep!
ETA: In case this helps, a few times in other posts you asked me about Celiac disease but I have been tested for this and it has been ruled out as I have no markers or antibodies for Celiac. But I have been gluten free for almost one full year (in Jan!) due to having Hashimoto's Disease and to hopefully reduce overall inflammation.