Reality Or Expectations

[maggie]

"I don't think Mayo would be helpful to you....you already have a diagnosis. Your local specialist needs to understand that Mayo clinic isn't any better at treating this in most cases than he is. That's because it's trial and error. Mayo clinic doesn't follow patients (for the most part) so all they will do is prescribe the top meds that tend to help people the most and tell you to try them. Your own local physicians can do that. Get copies of the journal articles that discuss the medications that are tried for folks with these conditions, read this site and other dysautonomia sites and get your local Dr to start prescribing trials."

This is the answer to one of the posts. It breaks my heart to come to the realization that is this what we are to expect for treatments? That the patient is to bring in data to a doctor not trained in the area of our needs and ask this person just to try different options and meds on us? Don't we deserve to have a doctor who has knowledge in our disorders? Do you know of any other field of medicine where this type of treatment occurs? Does one go to a doctor with cancer and is asked to bring in all the information they can find and then the doctor will try to see what works? Have I been in never never land assuming that I would be able to find a doctor that would actually have knowledge in this field and be able to treat me? I ask of you on this forum are my expectation too high?

Maggie

[firewatcher]

I ask of you on this forum are my expectation too high?

Yes and No. Not even a cancer doctor who has studied cancer for 50 years completely understands every cancer. You must remember that while this disorder (POTS) has been seen and written about since the 1800's, it has not been "classified" as an "official" disorder and studies since the 1990's! It crosses too many systems and does not present exactly the same way in every patient. You MUST be your own best advocate and researcher! Only you know how you feel and what each medication does to you. An open minded doctor with a healthy respect for YOU and what he does not know is your greatest ally! How long has diabetes been an issue? Billions of dollars in research has been thrown at it, and there is still no cure! It is going to be trial and error for a long time. There are too few of us for this to be a huge area of medical concentration, and even then one doctor could not have enough braincells to understand the scope of our conditions. We'd all need a cardio-neuro-psych-endo-rheuma-nephrologist!

Start clicking your heels Dorothy, you're not in Kansas anymore! If you come across some pixie-dust let me know! I've got some doctors I'd like to sprinkle it on!

[Poohbear]

Maggie,

I think it's normal and natural to expect to have Dr's who are truly specialized and knowledgeable however the reality is that in the field of various autonomic dysfunctions there are very few specialists across the country, the knowledge about these disorders in limited. Most people, no matter how extensive the testing they've had, do not find the root cause of their illness. That means that treatment options are still very limited and narrow--mostly consisting of fluid increases, salt increases, various beta blockers, midodrine, florinef, sometimes SSRI/SNRI's, sometimes combinations of several of these things. Then there are behavior modifications added in. While it is nice when you can get to a specialist it's also sometimes not helpful beyond diagnosis. Once a person has a diagnosis, they don't really need an "autonomic specialist" to play the trial and error game of medications.

As many on this site have been around for years can tell you, even when you go to one of the 'top specialists' in the field they specialize in their own narrow piece of the autonomic nervous system and are usually unable to address all the needs of the patient. It would be unrealistic for us (in the case of dysautonomia's anyway) to expect any one Dr to treat us---the ANS controls too many organ systems and no Dr can be expected to specialize in the ENTIRE ANS system.

There are MANY diseases and illness where little is known and the specialists are few and far between. This places patients who have those illnesses in the position of having to do their own research and advocating for themselves. Yes, there are cancer patients who have to bring in their own research to the Dr!!! There are several in my family with a rare form of cancer that is not known or understood by many oncologists (most oncologists never see the type of cancer that runs in my family their entire careers!). If myself or other family members were not able to research and read up and take things in to the physicians caring for these family members, they would have died by now.

[toddm1960]

I ask of you on this forum are my expectation too high?

Yes and No. Not even a cancer doctor who has studied cancer for 50 years completely understands every cancer. You must remember that while this disorder (POTS) has been seen and written about since the 1800's, it has not been "classified" as an "official" disorder and studies since the 1990's! It crosses too many systems and does not present exactly the same way in every patient. You MUST be your own best advocate and researcher! Only you know how you feel and what each medication does to you. An open minded doctor with a healthy respect for YOU and what he does not know is your greatest ally! How long has diabetes been an issue? Billions of dollars in research has been thrown at it, and there is still no cure! It is going to be trial and error for a long time. There are too few of us for this to be a huge area of medical concentration, and even then one doctor could not have enough braincells to understand the scope of our conditions. We'd all need a cardio-neuro-psych-endo-rheuma-nephrologist!

Start clicking your heels Dorothy, you're not in Kansas anymore! If you come across some pixie-dust let me know! I've got some doctors I'd like to sprinkle it on!

Hey Fire,

What a great post!! It's very honest and blunt, while still being understanding. I think at one point or another we've all felt down about our doctors either not having a clue or giving up on treating us. We just need to stay positive and learn all we can to help our doctors each step of the way. That's why this forum is great, both the inforamtion in it and also the idea's that are generated to get me do look up other things.

[janiedelite]

Unfortunately our disease is not the only one who leaves patients wanting for more knowledgeable doctors. My mom was misdiagnosed for a decade as being hormonal/menopausal, depressed, anxious, etc. when she actually had carcinoid syndrome! There is one doctor in our town who did a residency with one of the few carcinoid researchers in our country, but he only sees carcinoid patients one day a week and is never available for needs that arise acutely (like IV fluids/electrolytes, etc). We did a ton of research and decided to travel yearly to see a top carcinoid doctor in New Orleans, and found a local oncologist who is willing to implement the research doc's orders and who has a nursing staff who can help mom with acute needs.

Still, this local doc often implements the research doc's orders reluctantly, is behind on the latest research, and I always go with my mom because I seem to understand her disease better than he does at times.

We often wonder out loud what do people do who can't speak up for themselves (like the elderly or homebound)? How do people get the care they need without family or friends to advocate for them when they're too sick to do it themselves? To avoid being totally frustrated, we try to really enjoy the time we have to spend with each other (even at dr's appointments ).

She's had carcinoid syndrome with metastases to her liver for over 20 years how. Talk about perseverance!

[Csmith3]

Alas, yes, I think you are asking too much. Given that no one understands the mechanisms causing the symptoms of POTS and that POTS is probably several different conditions which are all being classed as one thing until someone knows better, I think you can't expect anyone to tailor an answer to you. It has to be trial and error by definition. But it's not quite as bad as you suggest. It isn't so much that no one knows about the treatments and you have to guide them, its more that the treatments don't produce consistent results in POTS patients (and, again, lack of detailed knowledge on the cause of POTS) which means it has to be trial and error on an individual patient basis.

I realise this is not a good answer, trial and error can take ages and I am at that point (again) where I can't face trying anymore drug combinations for now so I do know where you are coming from. But unfortunately, this is how it is at the moment. This isn't a reflection on the doctors - why should there suddenly be lots of autonomic specialists with all the answers when there aren't that many patients to treat? Where is the funding for research coming from when there are more lucrative markets for the pharmaceutical companies? If you were a doctor, would you choose to specialise in dysautonomia? Good quality research and clinical trials take many years. This is the reality of medicine and yes, there are inequalities between different illnesses.

Anyway, back to the original post. I think they have a point that once you have a diagnosis, most doctors will use the try the same treatments in a similar order. If it were me, I would still rather see the specialist just in case they thought my fact pattern suggested a particular answer and it is nice to speak to someone with some real understanding about the issues POTS causes. I can see the point of view that these advantages would be nice but may not be necessary. I suppose it depends how far you are prepared to travel and on any cost issues. These sorts of things don't really make any difference in the UK so I don't know what I would do in your position. If you did go for the local option, I think that if you don't respond to any of the main drugs, I would then see a national specialist to get their thoughts on what's the next best thing to try.

Sorry to be the bringer of bad news! Best wishes for whichever path you choose.

Cath

[mkoven]

I think it is worth getting a workup and treatment plan from an ans specialist. I didn't really improve until I went to Cleveland, even though my meds are pretty unremarkable--midodrine and florinef. Because my local docs had minimal experience treating this and rxing these drugs, and it seems SO WRONG to them to increase anyone's bp (esp in a middle-aged, over weight woman), I was stuck, and getting worse and worse. CC wasn't perfect, and there were areas of ans they weren't interested in helping address, without their diagnostics and suggestions, I can't say where I'd be.

[ramakentesh]

Alas, yes, I think you are asking too much. Given that no one understands the mechanisms causing the symptoms of POTS and that POTS is probably several different conditions which are all being classed as one thing until someone knows better, I think you can't expect anyone to tailor an answer to you. It has to be trial and error by definition. But it's not quite as bad as you suggest. It isn't so much that no one knows about the treatments and you have to guide them, its more that the treatments don't produce consistent results in POTS patients (and, again, lack of detailed knowledge on the cause of POTS) which means it has to be trial and error on an individual patient basis.

I agree with your frustration but i think this quote makes a point. its unclear because the research is still unclear - in the majority of cases the primary causes of POTs are still unclear. Anyone that tells you otherwise is misguided.