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Do You Agree With This Statement?


~Naomi~
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This has been bugging my since I read it in that new Pittsburgh POTS article. Not sure if it bothers me because I don't agree or because the alternative is too difficult to deal with, so I'd prefer it not be true! :rolleyes: This was the statement:

"Dr. Robertson cautions that "what physicians label as POTS is probably dozens of diseases. Each disease may have its own characteristics and its own cause."

Do you agree with this or do you think it's possible that POTS is its own disorder, with one root cause, just not identified yet?

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Personally, I say I have POTS, but in the last couple of years I look at POTS as more of a "sign" (a measurable symptom). I guess, to me, it is like saying I have a fever--it can be measured and it is real, but a fever is a "sign" that something is wrong. In that case, there would be an underlying illness or disease.

I can understand how it can be linked to other diseases. I have a few pheo forum friends that have POTS or get lightheaded with standing, all due to the high catecholamines that make them lose fluid. I also know some people with Cushing's that have had the lightheadedness when standing. Most of these people say it went away when they had their tumors removed or disease controlled.

When my vasopressin was found to be low, and at the same time I was a tiny bit hypothyroid, my endo told me to up my thyroid meds to see if my vasopressin levels would come up. They did not, but apparently off thyroid levels can affect the hormones that affect fluid levels.

While were talking this, I'd like to know what some of the people who say they have MCAD think on that also. In my eyes, it is just a "sign" also. Are they stopping with that "label" or are they looking for a cause of that? If a doctor diagnosed me with that, I think I would then be going down the next path to figure out why my mast cells are being activated. I haven't had anyone address that issue with me yet, but keep it on the back burner while I figure some other things out.

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I think that it is one disorder. However, POTS can affect people with so many other health issues that the way a body reacts can be different in each individual. This can be said for any number of health issues! That is why some people have a rash with strep throat and some don't. The variables are too random to say "everyone with POTS has these definite symptoms." Besides doctors know so little about this disorder right now to make a call like that.

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I think I just have POTS. There has to be something that starts it in everybody but I don't think I have multiple illnesses.

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The doctors at Mayo told me that my technical diagnosis is "Autoimmune Mediated Autonomic Dysfunction Neuropathy" when I had previously been diagnosed with P.O.T.S. And now that I think about it, I can't remember if it was "Dysfunction" or "Failure". I have never gotten a clear answer on my question if that means I don't have P.O.T.S anymore? I'm not even sure that DX is correct either... Yes, I tested positive for an autoimmune disorder via some protein serum in my blood...but they can't determine the nature of my autoimmune disorder..so how do they KNOW it's causing my autonomic issues and not a different issue completely? I was treated with IVIG before after the 4th treatment I had a near anaphylactic reaction and found out the next day after labs that my body was in full rejection of the IVIG. So I guess I'm not sure about that statement or much of anything regarding this condition. I was just as confused leaving Mayo, not to mention just as sick, as when I arrived, because they told me quite honestly they didn't know the answers in my case and it was going to be a guessing game.

Jen

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Idiopathic just means they dont know what is causing it.

Its a fact that all the major researchers other than Mayo think that POTS is a manifestation of many potential underlying causes, most of which are only beginning to be understood.

All the biomarkers that have been found other than tachycardia are only found in some patients which tends to suggest that we are not all the same.

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I believe POTS is just how our illness manifests itself and that it is likely secondary to some unknown etiology specialists have not figured out yet....personally I will never be happy with just the POTS diagnosis or MCAD.....I truly believe that something else is the heart of the problem and when that is discovered everything else will fall into place. I think of it like my son's Autism....it is a syndrome also and symptoms manifest differently in every child along the spectrum which makes a cause or treatment so difficult to define....when we nail down the true triggers then we can find a better treatment for these illnesses

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Yes I agree. Autism is probably a good - although more complex - analogy.

I wouldnt let the fact that there may be different underlying causes be a source of concern Naomi. It may explain why many of us experience quite different symptoms and there is real progress being made regarding these underlying causes with the possibility of treatments that target these causes rather than just symptoms.

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I interpreted this statement to mean that POTS can be found occurring in many known diseases, but when that underlying disease is not found, you're just kind of stuck with the POTS label. I've been checked for dozens at least - to no avail. I HOPE he means there may be many underlying causes, some of which are not yet known.

I believe POTS is just how our illness manifests itself and that it is likely secondary to some unknown etiology specialists have not figured out yet. I truly believe that something else is the heart of the problem and when that is discovered everything else will fall into place.

This is my feeling too, Bren.

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I agree Rama....I think its etiology just hasnt been stumbled upon yet as it is a fairly new syndrome that is just starting to come into the mainstream of valid medical illnesses. Hopefully with more attention being focused on it more specialists will become interested in studying a cause and treatment for it.

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Rama,

I have a question for you regarding Mayo. They are the only dealings I have with any autonomic "specialists"... I only realized in April of 2011 that things were progressing horribly.... So in less than a year I've gone from functioning to being bedridden. Why does Mayo seem to have such contradicting theories to other researchers? Do you think they are more credible?

I guess this is very personal to me because Mayo in Rochester is less than an hour away and they are very interested in treating me and in my case. But if they aren't opened minded to other ideas, am I doing a disservice to myself and family by staying with them? I realize that I shouldn't complain and am fortunate to be one of the lucky ones to get in so quickly. I never realized that people could have a problem getting in. My cardiologist sent me into the ER as an emergency admission. "Lucky" for me I could not stay conscious in the ER and I had begun having some organ failure so I guess they had no choice but to admit me. But I was a challenge to them from the very beginning and they really wanted to try to figure it out (they haven't yet) but there are some things they seem close minded about when I would bring it up (ex: I have a connective tissue disorder but they are adamant that has nothing to do with my autonomic problems and refuse to look into it). So I guess my question to you, because you are so knowledgeable about the choices, am I in good hands with Mayo (other DX includes: connective tissue disorder, possibly EDS, undefined autoimmune deficiency, post concussion syndrome (7-8 documented concussions- most likely twice that ),hyperthyroid, undefined bladder issues but we think are due to autonomic issues because it is recent- causes random incontinence and urinary retention, migraine disorder, fibromyalgia (diagnosed at Mayo) , small fiber neuropathy, and my autonomic DX per Mayo is: Autoimune Mediated Autonomic Failure Neuropathy and they removed my P.O.T.S DX from my DX list. ) I think that completed the list... But there may a couple things I left off but you get the general idea.

So, Rama, if you don't mind my question and imposing on your much superior knowledge, what is up with Mayo? Why are there so many differences? If you were me... Would you feel comfortable staying with Mayo? I'm willing to go elsewhere if I can get accepted somewhere else if it were a better option. I realize this is a lot of info and I just suffered a concussion TODAY so I'm not sure how coherent all of this was? Feel free to ask for clarification if need be. Thanks Rama and anyone else feel free to chime in! I need all the help I can get!

Thanks, Jen

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I believe that this is more like diabetes. First there was only the juvenile onset/type I, then there was the adult onset/type II. Now there are also adult onset-autoimmune/type I and the juvenile onset-obesity/type II. I would guess that there are distinct mechanisms that cause similar presentations, but have radically different causes and treatments.

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Jen, here's my take on your question. If, in your mind, you have a question then go with your gut instinct. You can always go back to Mayo - but, it never hurts to get a second or third opinion. It may give you more peace of mind if you have the strength to go to other places and either confirm or dispute your DX. When all is said and done - we don't want to have questions or regrets when we go to sleep at night. Having made peace within yourself and KNOWING what you're dealing with is almost as good as a cure - If you understand what I'm saying. If we don't have the unsettled questions - of what is this and why - then we can deal with it better.

Hoping for answers for you - know that you're thought of and here's a BIG ((((((HUG))))))) for you.

Issie

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My autonomic neurologist believes that CFS, Fibromyalgia and autonomic dysfunction are all related (and possibly the same thing) depending on the most prevalent symtoms - 1) fatigue, 2) pain, and 3) cardiac, sweating, GI, etc issues. After having this for a while, I now agree that my labels indicate the severity of my disorder, but not WHY. Numerous times, I have read that mast cells are often responsible for POTS and OH. While degranulated mast cells are likely why I am still ill, I have yet to figure out WHY they degranulate in the first place.

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From my understanding (and please correct me if I'm wrong) Mayo believes that almost autonomic issues are caused by Autoimune issues. The only reason I'm doubting that is because of the violent way I rejected the IVIG. I just wonder if there is more to it and they are just making the assumption. Is that a fairly common and valid assumption to go with? If one has tested positive for auto immune defecincy, is it pretty automatic that the P.O.T.S or whatever we are now calling it, would always be autoimmune mediated versions?

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Integrative or functional doctors look at all chronic illnesses as having root causes, bacteria, viral,

gut damage, parasites, nutritional deficiencies, etc etc etc ..

Not as being a part of some other disease process.

Imho, Until traditional medicine looks at our bodies this way, it's a waste of our time ...

I'm new to medical research so it is shocking to me how finding root causes has been ignored.

Tc .. D

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My autonomic neurologist believes that CFS, Fibromyalgia and autonomic dysfunction are all related (and possibly the same thing) depending on the most prevalent symtoms -

I keep going back to this. They don't know what CFS is either or what causes it. Since OI is prevalent in this disease (syndrome whatever), I wonder if many of us actually have whatever CFS is. OI is seen in other diseases, but I don't think as often? Hoping once they solve that mystery that it may help some of us.

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From my understanding (and please correct me if I'm wrong) Mayo believes that almost autonomic issues are caused by Autoimune issues. The only reason I'm doubting that is because of the violent way I rejected the IVIG. I just wonder if there is more to it and they are just making the assumption. Is that a fairly common and valid assumption to go with? If one has tested positive for auto immune defecincy, is it pretty automatic that the P.O.T.S or whatever we are now calling it, would always be autoimmune mediated versions?

I have autoimmune things related to my over-all picture of health dysfunction. But, I do not believe it is the entire cause of it. I'm sure that it is not the complete picture - FOR ME.

But, I wouldn't base that assumption on the way you reacted to the IVIG. IVIG carries the same warnings as a blood transfusion and anyone could react to it. Like for example - If you have an organ transplant - you have the possiblity of rejection because it belonged to someone else and your body doesn't recognize it as yours. Same thing with the immunoglobulins - they came from other people and your body didn't recognize them as yours - and launched an attack. That is a possiblity with anyone receiving another persons blood, plasma, organ and IVIG. It doesn't mean that this wasn't some of your problem - but, the solution used wasn't the best option for YOU.

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