Are We At The Root Cause?

[Alaska]

I just can't get out of my mind that I am not at the root cause of my health problem! Maybe it's because I have a history of getting the wrong answers, such as "it's anxiety". I'm diagnosed with Neurally Mediated Hypotension now. But, like another post stated, even when my blood pressure is normal I feel awful and dizzy. I've tried all the medications and intervention for blood pressure, blood volume and to keep a stable heart rate. All the medications have done is make me feel worse. I actually laugh stating "medications have actually helped me because they made me feel so much worse that when I go off of them I realized I wasn't as bad as I thought." I know I got a laugh from some of you on that.

Anyway, I just feel my diagnosis isn't at the root cause, which is where I want to be. Finding the core issue is essential!! My thought is that if you don't get down to the bottom of the fire, you will never put it out. Seems I'm just aiming at the top of the flame right now.

[Christy_D]

That is how I felt about my son. I just thought they were overlooking something since his POTS only got worse and worse and not better. The Mayo Clinic adivsed us to let him learn to live with his POTS and to stop seeing specialists. If I had followed their advise we wouldn't have gotten his MCAS diagnosis on Monday. Go with your gut and keep looking for answers.

[Dizzysillyak]

imho, Most of us here haven't discovered our root causes. In some cases and I'm not sure which ones yet, but i don't consider a root cause to be the name of a different diagnosis either.

Take celiac disease as a root cause for dysautonomia. Yes, it's true that some celiacs will have dysautonomia and eliminating gluten will relieve this symptom / diagnosis but this isn't true for ALL celiacs with dysautonomia. Afterall, dysautonomia can be a co-existing symptom for celiacs but it's not a known result of eating gluten. We know that in most cases, intestinal villi will heal by eliminating gluten but without knowing what causes dysautonomia, it can't be linked to the damaged villi itself.

I hope this makes sense. It does in my head. Lol ..

Fwiw, at this point, my best guess is to see an integrative or functional doctor who can help look for root causes of chronic illness. From what I've read so far, these can be nutritional deficiencies, food intolerances, dysbiosis, bad bacteria, parasites, toxins, etc. My latest experience with h pylori and paradites has me wondering what else my gut may be harboring.

I've been seeing one for a few years now and we've eliminated and identified several possibilities. One possibility is that I over produce gluten antibodies to even slight amounts of gluten. Another could be that due to my celiac disease my body is low on nutrients that can't be measured. For ex - I've responded to two bio available nutrients. Adb12 and p5p. And now juicing leafy greens appears to give me some energy too. : )

Fwiw tho, I've been totally disabled for 22 years now, so I'm not expecting to recover. This doesn't mean I'll stop trying whatever comes my way. Tc .. D

[sue1234]

I totally agree with you, Alaska! I will not stop looking for the root cause of my POTS. I've got a couple of theories that need to be checked out, but as always, getting in with the right doctors take time. Then, if they are okay, it seems like another year goes by and I go through another round of things to get checked out!

[Alaska]

It's frustrating because it's one test, wait two weeks. Then another test, wait two weeks. It's been 3 years of this now. I've lost a little faith in the medical feild. I had this thought in my head that we had so much figured out, but have learned we really don't.

If I had to start over and pick my first doctor I think my first question would be "if you don't know what it is will you be straight and tell me you don't know and refer me to somebody you think does?". It takes a lot from somebody to admit they don't know. Often it's simple stated it's psychological if they don't know. Frustrating!

[sue1234]

It's frustrating because it's one test, wait two weeks. Then another test, wait two weeks. It's been 3 years of this now. I've lost a little faith in the medical feild. I had this thought in my head that we had so much figured out, but have learned we really don't.

If I had to start over and pick my first doctor I think my first question would be "if you don't know what it is will you be straight and tell me you don't know and refer me to somebody you think does?". It takes a lot from somebody to admit they don't know. Often it's simple stated it's psychological if they don't know. Frustrating!

So true! Just this winter it, when I realized it is now my 6th year of having POTS, I felt so discouraged. I honestly thought that with every new doctor I went to over the first couple of years, that the next doctor would have the answer! I got really disillusioned with healthcare pretty quick, too. I could not fathom that doctors had no answers.

[Katybug]

I also agree that most of us probably have some underlying issue causing our dysautonomia. In my case, we know I have immune mediated inflammatory connective tissue disease...we just don't know which one yet and we may not ever know which one per my immunologist. But, I now have 2 different types of lab work supporting that dx and 2 specialists that agree on it. When we treat with prednisone, all my issues go away. We are just having an issue with finding a dose that I can tolerate that is strong enough to squelch the symptoms. It took 4 1/2 years to get this far. When I first got the POTS dx I thought we had struck gold. Now, I know that was just another (although important) piece of the puzzle.

Don't give up. If your body and mind are telling you that there is something more to it...listen to it. None of the treatments for just POTS were really helping me. But, after our first try with prednisone, I felt whole again for a couple of weeks. Now we just need to fine tune a treatment because we found the source of the "fire." It can be tiresome, but it is worth it...you are worth it.

[Monstrosity]

It's frustrating because it's one test, wait two weeks. Then another test, wait two weeks. It's been 3 years of this now. I've lost a little faith in the medical feild. I had this thought in my head that we had so much figured out, but have learned we really don't.

If I had to start over and pick my first doctor I think my first question would be "if you don't know what it is will you be straight and tell me you don't know and refer me to somebody you think does?". It takes a lot from somebody to admit they don't know. Often it's simple stated it's psychological if they don't know. Frustrating!

2 years and counting...im with ya i wont stop looking for the root cause

[ramakentesh]

Since there isn't even close to an established opinion about the primary etiological mechanisms particularly in pots your going to be waiting a while unless you decide to prescribe to one of the CFS patient theories often propped up by psuedo science.

On nmh there is often a sympathetic neuropathy, resulting in low sympathetic activity or perhaps reduced norepinephrine release which translates as reduced msna firing and impaired vasoconstriction. Recent work also implicated an autoimmune response involving the beta 2 adrrnreceptor and a subtype of muscarinic receptor.

Nmh responds well to droxidopa and snris according to recent papers.

[Dizzysillyak]

Hi rama,

I'm guessing the statement about cfs theories and psuedo science was aimed at me. Call me paranoid if you like .. Lol

I have to refer to all integrative and functional DOCTORS on this. I wasn't trained in med school or any health field

so I'll leave it to these doctors who've converted from the traditional approach they learned in med school to treating their patients, and themseles in many cases, to explain their functional medicine approach.

Fwiw, As a programmer analyst, ex now, trained in resolving complex logical problems, i see more psuedo science from the traditional side than I do from the functional. (insert eye roll ; ) ) Just look at how many drugs are recalled or all the warnings

on those still on the market .. Not that I consider all supplements as safe.

Just by watching health forums we can see how many people are not satisfied with what our doctors

are telling us. I waited for their "majical" solutions for 15 1/2 years only to find answers in holistic medicine. This is our lives and to them it's a career.

Tc .. D

[ramakentesh]

Actually no it wasn't. Most of your stuff is dietary if I remember and I think dietary interventions are an important way that people can help their disease process. Although I'm still not a fan of the science behind gluten ataxia. Lol.

What I'm talking about is the patients I sometimes meet who are bed bound, seriously ill, who go to some third baked doc with a flim flam theory that unsurpringly costs thousands of dollars to treat using some protocol only that doc can prescribe and who keep spending, never really improving on faith and who refuse to ivestigate other possibilities that could provide better outcomes, etc.

[ramakentesh]

But I guess my point was that if you want definitive answers on the root cause now their aren't any, just theories and claims filling the void.

[Dizzysillyak]

Oh . Good to know. I'm glad that we agree on this. I can only refer to dr hadjivassilou when it coes to gluten

ataxia. Without a better understanding of the brain and how nuerons work, I'll just have to trust those who are

studying this. I have to say tho that it is super cool not having ataxia anymore. : )

I'm with you on the flim flam doctors promoting their cures. We just need a better method of identifying

these. Throwing all holistic doctors under the bus was counter productive.

Tc .. D

[jenglynn]

I am where you all are. I have so many issues that seem to connect but not sure if they do. Even my providers at major centers can define me as anything but a "medical enigma." I laugh about that because it's actually says that in my discharge papers- lists all my DX and here is a long list- and state I'm a medical enigma. Like "We have NO idea what to do Ith you." but at least they aren't giving up. Maybe there is no ONE answer for me- just a perfect storm of genetic diseases and a very aggressive Autoimune Disease. I would really love to know what is casing all of this but so far it's a mystery to everyone, and I have seen doctors who are considered experts.

Maybe one day.... My main concern is not for me, but my kids, future grandkids etc. More awareness, research, studies- anything possible to learn as much as we can about cause and treatment. I am more than ready for an improvement, believe me, I've only gotten worse instead of better, but I also know the combination of my particular case is so complicated it seems impossible to put the pieces together. And we all respond differently to treatment, we all have differing symptoms and causes.

As long as WE never give up and keep searching and keep the doctors searching, it will happen. Maybe they are closer than we know!!!

Jen

[Frugalmama]

As others have said, it is so important to remember that we know we're not crazy . My doctors have always thought I was strange, because the treatment for each diagnosis I've had hasn't worked. I was misdiagnosed as Celiac, diagnosed with IBS (and not one of the IBS meds made a dent in my symptoms), diagnosed with POTS, but had absolutely no positive effect from beta blockers, salt, or midodrine, etc. Turns out now that I have indicators of mast cell disease, and we are persuing treatment along those lines. So it wasn't that I don't have IBS or POTS, but the treatments don't help because they're caused by an underlying condition. As jennglynn mentioned, I think it's so important to pursue a definitive diagnosis because this can run in families...my mother has almost identical symptoms to me, and my maternal grandmother, aunt and sister all have minor symptoms. So, I want to be prepared if one of my children becomes symptomatic