Trying To Get Autoimmune Panel/ Bad Situation With Doctor

[lgtaylor100]

I am going through a bad situation trying to get the Mayo dysautonomia autoimmune panel approved as in network by my insurance company. It needed to be approved by my primary doctor,who I liked up to this point and who ran lots of tests for me to rule out other disorders. The doctor came up with many excuses as to why he had not called the insurance company ( couldn't get through, didn't have the number of the tests. didn't have the direct number of someone he could call). None of this is true. It is always easy for me to get through to the insurance company, I did give him the number, and the test numbers.

Finally last Friday he got through to the insurance company. He told them that the patient (me) picked the tests from the internet. They also contacted one other doctor. Those of you who read my post about the neuro-muscular doctor may remember that he said I didin't have POTS because my blood pressure stayed the same or went up on standing, even though my heart rate went up 50 points on my TTT.

Basically, I did pick the tests from the internet. I got the info from the DINET website section on causes, one of which is autoimmune and which suggests that the doctor contact Mayo labs for info. Also, through this forum I have learned that many have had this panel done.

I do have other doctors that say I have dysautonomia, but the insurance does not have the records from them either because I had other insurance when I went to these doctors, or because I went so recently that the insurance company doesn't yet have these records, My primary does or will have all of these records.

I am devastated and feel betrayed because my primary who I thought was my advocate let me down and because the neuro muscular doctor's lack of knowledge about POTS caused this problem.

I feel I need to continue to see my primary because I have been very sick lately and do not have the stamina to go doctor shopping and I did like him up until now.

I said I would get a copy of my TTT to him today and asked him to please call the insurance company back. He said he would do it but at this point I don't trust him.

Any suggestions would be greatly appreciated. I felt supported up until now, but without this support I am starting to feel hopeless.

Lynne

[sandymbme]

Oh Igail! This is such a painful experience! When I first started getting sick, my (then current) PCP fired me. She had seen everything develop from the very beginning, had the most insight, but told me she just couldn't handle me anymore. She told me her patient load was just too high to be dealing with a patient who needed so much coordination of care. It felt like such a betrayal, and I was so sick at the time the task of finding a PCP seemed overwhelming. At the time, I had my diagnosis of POTS, (from the Cleveland Clinic, who did all my autonomic testing) but I really had no idea what I was dealing with. I just felt completely blindsided.

It ended up being the biggest blessing in disguise. I interviewed a bunch of doctor's (usually could rule them in or out as possibilities just asking the front office staff some questions.) I would ask things like: How often does this doctor attend conferences and lectures? Are they willing/able to coordinate care with a variety of specialists? Are they willing/able to take extra time with their patients? How quickly can you get a response about emergent situations? Are they typically aggressive with treatment, or do they prefer to take a more hands-off approach and see if things will run their course before intervening? A lot of times the front office can answer most, if not all of those questions for you. I only had face to face visits with a couple of doctors. I ended up with a PCP who is passionate about patient care, an amazing advocate for me, and she does not think the solution to every problem lies in her prescription pad. She is willing, and knowledgeable able alternative and herbal/homeopathic medicine as well.

The moral of my story is, nearly all of us have been in this situation, or something similar, at one point or another. I know it is very, very disheartening. But it is an opportunity as well. You have found out relatively early in the game that your PCP is not quite the advocate you had hoped for. This gives you the opportunity to look for a doctor who perfectly meets your needs. Because as a dysautonomia patient, your needs can change wildly on a daily basis, and so much of what happens to us is unexplained. So many of our treatments fall into what insurers often consider as "experimental", because there is no "standard" treatment for us. So having an MD who is responsive to your needs, is willing to go to bat for you, and willing to stay on top of the latest research, is going to be key to managing your health in the long run. My PCP had never heard of POTS when we started our journey together 4 years ago. Now she has several patients with it, a couple of whom she was able to correctly identify and send for testing to officially dx because of having seen me. She has never accepted that there is no way to improve my health, and never stops looking for answers and alternatives. And as much as my health has deteriorated over the last several years, I am completely confident I would be in a LOT worse shape had I not been under her care.

Good luck, and I will be keeping you in my prayers!

Sandy

[songcanary]

If it were me, I'd try this: Open your heart and mind and tell your PCP that there has been a big misunderstanding and could you please start over. He might be relieved! I only say this because you like this doctor and would like to stay on as a patient.

Try to summarize your important concerns and present them concisely. Then maybe the two of you could advocate as a team instead of butting heads. It would at least be worth a try and just might be helpful. Good luck!

[janiedelite]

You've received some excellent advice so far! The only thing I can add is that I always find it helpful to bring a family member/close friend with me to all of my appointments. Prior to the appt, we review what our goals are so that if I forget, my helper can help get those questions answered. Also, if for some reason your doctor isn't willing to take you seriously, your helper can politely help advocate for you.

[HopeSprings]

OMG - how annoying! If this Dr. doesn't come through, I think you're going to have to take this to another Dr. Get your autonomic test results together, get articles about autoimmune POTS and take this info to someone else. I've read that between 9 - 14% of POTS patients will test positive for the antibody. A high enough number -in my opinion- to make testing worth it. Maybe that endocrinologist you're going to see? Good luck and try to keep the faith. I know it's hard to fight when you're feeling weak - but you gotta!

[lgtaylor100]

Thanks everyone for your great suggestions. I think for now I will have that talk with him that Songcanary suggested and see where that goes before I start looking for another doctor. I do already take my husband with me to most appointments and it has been helpful. He has been a good advocate but at this point he is frustrated too.

My primary doctor talked to my new ANS specialist, who I also like, and he said that the Mayo autoimmune panel is mainly for research. I don't think that is true but I will talk to him.

Naomi - I did see the endocrinologist already who knows nothing about POTS but ordered labs that could indicate a pheo or a pituitary problem. Also cortisol.

Anyway today I had a pretty decent day. I went for a short walk and sat in the park for about an hour.

Thanks again everyone for your suggestions.

Lynne

[lieze]

Lynne,

I'm sorry you're having this issue.

I have felt totally betrayed by my doctor too.

It made me feel a mixture of anger, dismissed, and neglected.

First was when my husband mentioned she questioned whether I had multiple personality disorder-he later said she never said that so I don't know what was said but that sent up a big red flag right there. I was practically in tears...

Then for my disability the this patient has anxiety, an eating disorder and takes Xanax.

Oh I don't know what exactly she said but there is sooo much more to the story than that.

She's summed me up to be a stressed out loser basically and I am so much more than that.

If she only knew how much I tried and struggled everyday and how I tried so hard to continue working when I felt like I was gonna fall right on my face or die of a cardiac event right there.

More than anything I feel hurt that I have put my trust in her to be my doctor and to get these type of less than favorable responses from her.

I have had to advocate for myself on more than one occasion and I guess we learn from all

experiences.

I am not sure what I will do next-I am tackling my anemia with a specialist...I really am not looking to take meds for this....I don't know what to do....time will tell....

I do hope things work out for you.

As common as these experiences maybe for people experiencing it for the first time really stings....heck it probably never is enjoyable.

I hope that your doctor either steps up and tries to help you or that you find someone who will-you deserve it.

[Katybug]

lgail,

I agree with both Sandy and songcanary...see if this was just a bump in the road, but if it doesn't work out, take it as an opportunity to interview docs and find a good fit. I would also add that looking for a cardiologist or neurologist that is willing to take a special interest in your case (either because they already have some specialties with POTS or because they are willing to learn) could be really helpful.

I have been lucky to find both...the cardio that dx'ed me was mostly unfamiliar with the treatment but wanted to learn, and, I was referred to a neuro whose specialty is autonomic dysfunction and migraines. Having them on my team has been a God-send! My PCP is supportive but flat out admits he could not be my main source of treatment as he just wouldn't know enough. He only has me come in every 3 months so he can keep up to date on what is happening with me in case he needs to treat me for something more common like an infection, cough, etc.

I wish you all the luck in finding a great doctor and hope you continue to have more days like today!