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Battling Insurance Company... Worth It?

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Right now I'm battling my insurance company to get into see Dr. Grubb. Now starting to go into appeal process lol.......

I Just want honest answer here. TTT was positive for Pots no other tests have been done checking for pots but nothing I've read anywhere explains these episodes I get here: http://dinet.ipbhost.com/index.php?showtopic=10325

And the fact of my eyes have not constricted properly since i was 6 and when i was 14 I lost 40 lb's in 2 months.

I'm tired and exhausted and I'm really skinny can't gain the weight. What's my possibility of having POTS?

Hyperadregeneric what does that mean precisely?

Does anyone here have episodes to the extent that you see in that post I linked to?

Does pots come on gradually? Mine came one gradually I remember i just had 0 energy was not even sick. then it turned into what I have now.

Does POTS affect weight, temperature regulation, pupil dialation etc.?

It sounds like I have a autonomic nervous system disorder but what do you think? Should I not see anymore doctors and just wait to see Dr. Grubb.... No Other doctor has done jack except for my primary care physician who has been getting me referrals everywhere.

I've done tons upon tons upon tons of research...... I'm stuck can't do anything and just hope that it is pots and that it may go away someday because the uknown is what I fear....... It could be something else mimicking...... I got checked for mvp too Don't have it :)

one more thing I read somewhere pots can turn into msa is this true? I also read that 10% of all pots patients develop pure autonomic failure is this true?

- John

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Battling insurance company worth it? Not sure... they may never see it your way, so in that case the time and energy would not be worth it. Also depends on your plan and company... are they good at working with patients? :)

As for finding more info and seeing if you think Dr. Grubb would be helpful to you, you could look up and read over his journal articles and two books to get an idea of what his research and practice is like.

It is important to find drs. to help you, both near you and further away like Dr. Grubb. Especially with him not being covered by insurance you will need drs. nearby. Also, most people I think only see Dr. Grubb once a year. Use the Physicians List on DINET and the search engine for the forum to see if you can find drs. closer to you. Also, you can join the Meet Others Program to find out more about what people from your area have found to be beneficial.

Also, in my experience finding drs that are affiliated with a large reputable research and teaching hospital are how to get drs. that are educated with the more recent information out there etc. Also, look not only for a cardiologist, but a neurologist and/or endocrinologist as well. If you think it is more hyperadrergic POTS an endo. maybe or more help.

As far as what is all going on to "cause" POTS in people is often not able to be pinpointed. If there is an underlying cause (i.e metabolic, mast cell, EDS etc) this can also be very hard to pinpoint. As far as developing into MSA, the number seems high... not sure where you got that. I think it is more likely for POTS to develop into Pure Autonomic Failure etc. then MSA. It is more dependent on the underlying cause of POTS for that person.

Especially for someone that is so young and that it happened more suddenly than having it all your life, you have a greater chance of it resolving than someone older that has had it for years etc. So, it is important to not get caught up in what may occur, try and focus more on the here and now and not what may happen in the future. It is important to not let that get the best of you. Hopefully you can find knowledgable drs that can help find treatment to help your symptoms decrease and possibly find the underlying cause.

I hope that helps (and doesn't confuse)!

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My money would be on most of your symptoms being from POTS. At your age, I would have listed very similar problems (and they were gradual onset), but not to the same extent - my symptoms have never been as bad as yours. But that doesn't mean it can't be POTS - severity of symptoms differs. If you do the things on the "What helps" page, do you feel any better? And do the things on the "What to avoid" list make you feel worse? Of course they won't all apply to you, but they should give you an indication of how many of your symptoms could be due to POTS.

In your shoes, I would want to see a POTS specialist and ajw's remarks look very sensible about finding someone appropriate and that if you self-fund, the main costs involved are for tests rather than the doctors consultation time. I don't live in the US so can't comment on the merits of the insurance battle. But I would want to see someone asap and whilst I don't doubt that it would be great to see Dr Grubb, I think I would start with someone who has a shorter waiting list.

I wouldn't get too concerned about prognosis because no one is going to give you a firm prognosis you could rely on. Because it isn't just a case of how long the POTS lasts, but how bad the symptoms are at a particular time as it seems to have a habit of relapsing and remitting. Unfortunately, we have to accept that research into dysautonomia is at a relatively early stage and this is what makes diagnosis, treatment and prognosis so difficult. I am not aware of POTS developing into anything else.

From what I have read, males are most likely to be affected in their teens, so you might find this is a short term problem (or will at least significantly improve).

Hope you find some help soon.

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I would keep at it with your ins company. Dr. Grubb has a long waiting list, so maybe you'll sort things out by then. In the meanwhile, I've read about a few drs in TX that treat POTS - I remember, because I have family there and thought about going. You may want to check the dr lists on the various dysautonomia websites. I wouldn't worry about PAF - that is pretty rare. And testing for POTS doesn't always give much info, but a good dr can help to come up with a treatment plan that helps to get you back on your feet.

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