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Saw A Specialst, But Now I'M Confused


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I'm at mayo getting all my tests done... it's going pretty well, but I'm afraid they will send me away will the "drink water, eat salt, raise the head of your bed, have an exercise program" speech.

The doctor- who was very sweet and seemed like a fabulous, knowledgeable autonomic specialist- spent a lot of time with me trying to get me to believe that THE ONLY symptoms of pots are fatigue and tachycardia on standing. Anything else is not pots, he said. So anything else going on with my body isn't due to pots, but he is sure I have pots.

He says he strongly believes that in six months, if I start doing all the stuff they say to do I will be mostly better.

But I've already been doing this stuff since I was diagnosed and things are only getting worse. I would be really sad if they sent me away without actually helping me.

What should I do? Any suggestions?

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I'm at mayo getting all my tests done... it's going pretty well, but I'm afraid they will send me away will the "drink water, eat salt, raise the head of your bed, have an exercise program" speech.

The doctor- who was very sweet and seemed like a fabulous, knowledgeable autonomic specialist- spent a lot of time with me trying to get me to believe that THE ONLY symptoms of pots are fatigue and tachycardia on standing. Anything else is not pots, he said. So anything else going on with my body isn't due to pots, but he is sure I have pots.

He says he strongly believes that in six months, if I start doing all the stuff they say to do I will be mostly better.

But I've already been doing this stuff since I was diagnosed and things are only getting worse. I would be really sad if they sent me away without actually helping me.

What should I do? Any suggestions?

We had the same problem at Hopkins. Via research, we had already identified what was wrong with our son before getting a DX. They recommended the same thing and I said: "It's not working!" A GI motility fellow/resident looked at me incredulously, she said "I have JUST given you instructions. How can you possible tell me it's NOT working." I was forced to explain that we had already suspected dyautonomia & had begun treating him at home. She was beyond SHOCKED. She couldn't believe that patients could do that on their own. Bravo DINET!!!! We not only can do that, in many cases we MUST as the medical profession has failed us. Once acute symptoms had set, it took over a year to get a DX & treatment plan for Mack.

Sorry to ramble....Once I explained that their suggestions weren't enough, they hooked us up with Dr. Peter Rowe for ongoing care. We never saw him while at Hopkins on that visit. He called us a week or so later & we did our first visit by phone. Of course, we've since met and he has provided fabulous care to our son for years. Insist that they hook you up with someone for ongoing treatment. I suspect that you will have to trial many meds before finding your perfect combo. Beg for ongoing help at their level of quality.

All the best- let us know if your needs are addressed to your satisfaction.

Julie

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You are still there so try to get your concerns addressed.

My Mayo doctor explained that since the heart is working so much harder and the body so much harder to keep a balance, that is a main part the reason for fatigue. He said that our hearts beat by 11am what a normal persons does in an entire day.

I do agree that most of my orthostatic symptoms are most accelerated when standing. HOWEVER, if I sustained several runs of SVT or over exertion like exercise...my POTS is so much more sensitive to activity. I may be able to stand in a line for a few minutes before needing to sit down on one day and I may need to sit right away on another day. Also, my digestion, elimination and body temp are effected and when my heartrate is too high, these systems don't regulate normally. These are controlled by the ANS clearly your doctor is not addressing something...just make an appointment to have another discussion.

I was so happy at first when earlier in my treatment a non mayo EP suggested cardiac rehab....I went happily and hopefully only to last into the second week and be told I had to stop because I started to develop bad arrhythmia's the more active I became.

We have so much on our shoulders to carry that we must not give way if someone tells us that we are not trying hard enough!!! You are not to feel confused, go back there and get your answers!!! The incredible gift of Mayo is that if you truly can be patient, you will get your answers, you may wait another week but they will and do stick with you until you are clear on a suitable treatment plan and they get you to a better place.

bless you and hang in there,

tearose

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Sorry, but the autonomic specialist is not as well informed as he/she should be. You can look at the symptoms list on the main DINET page--and many, if not most, of those symptoms are recognized in research papers and medical reports/books/articles to be part of the constellation of symptoms of POTS. On the good side, sometimes really good management of the primary symptoms of POTS (the tachy issues) can make lots of the other symptoms improve.

I hope that helps...and please always remember that just because someone went to medical school doesn't make them always right. Although they probably know quite a lot more about how a body functions, medically speaking, YOUR body is YOURS, not what was in the text book, or in all the patient consultations before YOURS... you always have the right to question what you're told, and knowledge is power.

Nina

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You are still there so try to get your concerns addressed.

My Mayo doctor explained that since the heart is working so much harder and the body so much harder to keep a balance, that is a main part the reason for fatigue. He said that our hearts beat by 11am what a normal persons does in an entire day.

I do agree that most of my orthostatic symptoms are most accelerated when standing. HOWEVER, if I sustained several runs of SVT or over exertion like exercise...my POTS is so much more sensitive to activity. I may be able to stand in a line for a few minutes before needing to sit down on one day and I may need to sit right away on another day. Also, my digestion, elimination and body temp are effected and when my heartrate is too high, these systems don't regulate normally. These are controlled by the ANS clearly your doctor is not addressing something...just make an appointment to have another discussion.

I was so happy at first when earlier in my treatment a non mayo EP suggested cardiac rehab....I went happily and hopefully only to last into the second week and be told I had to stop because I started to develop bad arrhythmia's the more active I became.

We have so much on our shoulders to carry that we must not give way if someone tells us that we are not trying hard enough!!! You are not to feel confused, go back there and get your answers!!! The incredible gift of Mayo is that if you truly can be patient, you will get your answers, you may wait another week but they will and do stick with you until you are clear on a suitable treatment plan and they get you to a better place.

bless you and hang in there,

tearose

Beautifully said, Miss Tea. Keep asking for help & don't leave until you get it!!!

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"... the only symptoms of POTS are fatigue and tachycardia upon standing"? Really? I suppose dizziness, headache, nausea and the plethora of other goodies are just coincidence?

Technically, even tachycardia itself is not a symptom of POTS either, but rather it and all the aforementioned symptoms are caused by the symptom caused by POTS (bad vasoconstriction, etc.), but in reality we suffer from a multitude of symptoms caused directly by POTS.

The statement the doctor made was irresponsible, confusing and outright wrong. I'd expect more from a "dysautonomia specialist."

You are your only advocate. Keep fighting for yourself.

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Actually, he was the "expert of the experts"... he was a very nice guy and he spent a lot of time with me. I don't want to argue with the head of the pots division.... but I'm actually seeing a different neurologist so I guess I'll ask him when I see him again.

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Sorry, but even "expert of the experts" is not correct in this case. And, he/she is YOUR EMPLOYEE, serving YOU. You have every right to disagree and/or pose questions.

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I suspect it was 'maybe' one of those semantics issues - and not something to truly get hung up on - & I bet they thought you wouldn't get hung up on it - but they forget we cling to every word trying to grasp, formulate coherent thought, process and then accept or reject and then try to speak intelligently to their idea - all while under enormous stressors. So I don't think I would get stuck there - but rather move beyond that annoying part of your conversation. I bet much more good was done that the unpleasantness of that. I only say that because as I read my many page Mayo workup papers - sometimes in reading it - I take things in a defensive wrong way ... only to suddenly remember my responsibility to not immediately judge - but let things set awhile to digest. Then I learn and process more - and reread - and get an entirely different take on the phrase or statement.

I do though admit you need to 100% keep focused on your goals and reasons for going. Hand write each and every point that brought you to your visit. If it's a list of questions, or a list of ideas, or a list of symptoms - whatever it is have it in writing with you for your next appointment. At the wrap up visit go down all the bullets of your concern - reiterate what you understood the doctor to say about it - what you are to do - & then express your feedback on his/her instruction. Such as...

While at home I've tried to learn what I could about what could possibly be causing _____ in the context of a dysautonomia type health issue (as this was our best guess). Now I understand that you believe that ______ is truly not at all in light of POTS causation (and the realm of what people endure day to day with it) -- but for us at home we notice it kind of comes on when ______ - & hence we guessed it to be related. Since it's NOT related -- what then perhaps could be causing it? WHILE we are here - I need to have some clarity on this - so which discipline can you suggest we add to our itinerary - so we can gather more information about this?

I would gently announce you brought your written concerns and ask he indulge you before you entertain leaving Mayo - with a review of what you've learned and what you are to do about it.

Then to clarify further - with your examples: So before all of this started I never experienced ____ but now that my symptom group has a name - this POTSyndrome..... I guess I assumed that my ___,____, ____ were part and parcel of it because your sympathetic nervous system regulates ____,____ and blank, right?

OR Dr. am I misunderstanding? Anyway after you learn and get your clarification - go over your plan for the future. By that I mean any and all prescriptions, any and all follow-up visits and the timing of such, any and all follow ups with other disciplines that were arranged - ex: do I call you or the specialist you referred me to about my _____ symptom.

In the end - even after a multi-thousand dollar work up lasting over 2 weeks..... The body (or mine anyway) ends up with the age old advice of eat healthy, lose weight, keep very hydrated, keep up with electrolyte solutions, wear compression stockings, and keep in touch. The keep in touch would be to report how this plan is working or not working. If it is not working - I have in writing which medication might be added to this regimine - so already I have a call in to discuss it. OVER and above what another discipline ordered because he is the main specialist for my symptom group.

But hammered out were a litany of other things uncovered like borderline diabetes, small fiber neuropathy, sleep apnea, labile htn, adrenergic surges with standing, some rheumatic things addressed, some musculoskeletal things addressed.......These issues were sieved through other specialists while there..... But nothing would be a automatic cure. If I as you had been doing all of these things perfectly at home for months even before my visit to Mayo -- then again I would super-kindly dig in my 'I'm confused here heels' and express wherein my confusion lie and ask how to begin to feel comfortable about the outcome of your Mayo trip - where you are being told to in essence keep up the good work with no new tactics to try. I find if you are very specific about what you need to know and why - you can work as a team to both of yours best satisfaction.

Also a tip is to go and get your records every couple of days down at the medical records office if you haven't already - they are clear and succinct and spell out in 'doctor speak' what their impression and plan are for you... You may view simply everything that way - and then can go into your appt. more confident you guys are on the same page!

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