KiminOrlando

Have them draw an 8:00 cortisol level to check your adrenals. You may find that they are abnormally low causing you to feel like you are clawing your way out of a deep pit just to get out of bed. Mornings are the WORST!

Yes. Cortisol levels. Cortisol stimulation tests. Yes. It is all interconnected. My levels were low in the morning, but rebound by the end of day. This is such a familiar story. Let us know how it goes. Kim

This advisory is for REGULAR MEDICARE. I have no experience with Medicare Advantage. Be careful signing the ABN (Advanced Beneficiary Notification) form. Often if this form kicks out, it is indicating that there is a problem with the procedure or the procedure coding and Medicare is likely to deny the items listed on the form. If Medicare does not pay for the procedure, you will be paying. Pay special attention to the amount on this form. The amount they list to be paid CAN be the uninsured patient rate. It CAN be at least 10x what they would have been reimbursed if Medicare had paid. THIS IS NOT ILLEGAL. It is unethical, but Medicare cannot help you if you sign this form. I have been told you will automatically LOSE your appeal if you sign this form because it is a contract where you agreed to pay the amount listed. If you are presented with this form, I would recommend asking for a copy of it so that you can call the Medicare number on your insurance card (from the waiting room) and give them the procedure code on the ABN form along with the state you will be receiving the procedure in (this matters). Ask them to look up the Medicare approved amount. Write down the amount. Call your ordering physician unless it is the physician you are dealing with. Go back to the people giving you the form and let them know the Medicare approved amount and ask for an explanation of the charges on the form. Ask them to explain why who pays makes that much difference (nicely). This just happened to me a couple of times recently. If you didn't sign the ABN, Medicare says they go to bat for you and you don't have to pay for it. I don't really know how that would work out, but I would think you wouldn't have to pay more than the Medicare approved amount. If you did sign it, you are stuck and have to pay what is on it. I had a lymph node biopsy at a local hospital. They printed out an ABN form and wanted me to sign saying I would pay $7,198 if Medicare didn't pay. I had problems with this provider before not working claims. I called Medicare and found the most they pay is $754.00. I went back to them and they agreed to discount it to $1,798. I still said no. I called the ordering physician and they set me up elsewhere. The claim went through with no ABN being generated. This provider had left diagnosis codes off in the past, never refiled the claim and never appealed it. Then they waited for the 1 year mark to be up (appeal deadline) before they sent me a bill to let me know that they were not working the claim. They charged me the uninsured patient rate. They refused to send me the ABN form that I should have signed. Had I gone to Medicare within a year of the claim being filed, I wouldn't have had to pay the claim. I really believe some places do this because they know they can make more if the claim doesn't go through. They make no effort to fix it or work with you. Please be very careful when dealing with this form. Private insurances like Cigna, Blue Cross, etc. have contractual limits on what providers can charge their clients, so they are protected. Medicare has no such protections. Please move this to the other forum if you think it belongs there. I wanted as many people to see this warning as possible.

I have something similar and my doctors think it is something called Costchondritis. It is related to my autoimmune diseases. https://medlineplus.gov/ency/article/000164.htm It may be something totally different for you. You should definitely mention it to your doctor.

I have had several with hypoPOTS and no other heart issues. None of my halter monitors have been considered to be anything significant. All I got out of it was, "yes, we see the tachycardia. That is the POTS showing." For me, I consider them useless and hate to wear them. Every time I go in the hospital for something unrelated, they slap one of those things on me and hang it around my neck. It gets in the way of the IV and the IV stand. If it never shows anything, why do I have to pay for it every time? Either there is nothing wrong with my heart or there is. You can't have it both ways. Can you tell they frustrate me?

I am on fludrocortisone and do not salt load. I do have to supplement with potassium and occasionally magnesium. I also drink plenty of fluids, especially in the mornings. They initially thought I had Addison's, but my adrenals rebound late in the day, so they ruled it out. Depending on the situation, I sometimes have to use a corticosteroid because I don't make enough cortisol even though my cortisol stimulation test was 'normal'. I guess my body doesn't do it correctly unless it is prompted. As of yet, that is unexplained. Good luck with your fludrocortisone trial. I hope it works for you this time.

My insurance covered it at .1 mg florinef, but my doctor ended up putting me on prescription potassium to solve the problem, ultimately because it is a known issue. You may want to look at that for a long term solution.

I treat every one of them like they are on a job interview and I decide if they get the job of managing that part of my care. Of course, I am the project manager, so I can make adjustments to my project team as needed if one is underperforming.

I have gastroparesis and had the gastric emptying test, but first had to have all of the scopes. I recommend doing all of his tests, then go from there. It is a pain, but they do need to rule out more common stuff.

Not surprised. Caffeine puts me to sleep. My family thinks I'm weird because I take a nap after drinking a cup of coffee.

Done.

Dizzy, I've been on it for 10 years. This makes no sense to me. I would push for a more detailed explanation. Your girls have been through too much to now go through an experiment because of some policy. I hope you get this worked out. Kim

I recommend calling ahead and requesting preboard. They will get you on the plane, then check your wheelchair at the gate. When you land they will then know to pull the wheelchair out first otherwise there could be confusion. Ask for assistance during the layover because your flight could be late, you may have carryon and your connection could be on another concourse or canceled. If you get their assistance, you get extra help in case something goes wrong. Likely you could manage if nothing goes wrong, but if something does, you will be on your own. Also, DO NOT leave the airport until you fully inspect your wheelchair. My armrest got broken. Insurance doesn't cover it and airlines give you such a short time to prove damage.

If you are in ATL, pop over to Vandy in Nashville. They have an awesome Autonomic center.

Your ANA and the Rheumatoid Factor were both negative or your RF was negative but your ANA was positive? Doctors sometimes split hairs on this. My ANA was positive but nothing else was. I was told I was fine. I have RA, but my bloodwork was negative for years. I was lucky enough to have a doctor who would still make the diagnosis and treat me. It made a world of difference.

Acid Reflux can also contribute to Interstitial Lung Disease. I have gastroparesis too. My doctor put me on a med called Domperidone and it changed my life. Many doctors won't use it because it isn't FDA approved and has to be compounded in the US. It is more widely used in Canada and the UK. I now have Interstitial Lung Disease. Don't mess around with Acid Reflux. It sounds harmless... just take some Tums. Nope.

Find another doctor. I was told that 33 years ago. I didn't grow out of it.

Be careful treating symptoms before your appointment. Some of these tips may help somewhat, making your daughter look like she is better than she really is. It could delay or even prevent her from getting a diagnosis. I know as a mom it is hard to watch her suffer. Just be proactive and continue to advocate for her. You are on the right track.

I have osteopenia too. I've been on prednisone, so they chalk it up to that. Interesting. I'm also low on D, so I take supplements. They think my gastroparesis has something to do with malabsorption, but all of this is a guess. My next bone scan is on Friday.

Oh, Canada... that changes everything. My friend is an Ophthalmologist in the U.S. and because of me, has started recognizing patients with dysautonomia. Before he never really thought much about it, but after researching for me, has found several patients with eye problems that didn't know they had dysautonomia. I get text randomly from him telling me he found another one. There isn't a lot out there about dysautonomia and eyes, but some stuff does happen. Are they sure you have POTS only? Pure Autonomic Failure (PAF) has POTS as a symptom and also the eye problem that you mention. It doesn't mean you have PAF, but it might be worth reporting back to your POTS doctor and letting them know about the eye thing. Can you see a neurologist?

You may want to go to an ophthalmologist, not an optometrist. There is a HUGE difference. There is eye involvement with dysautonomia sometimes and likely with concussion.

You live in Tennessee. Have you been to Vandy? They have one of the best Autonomic Clinics in the country. I would recommend trying there.

Please keep us posted. Hope they figure it out soon.

When I was younger, my legs looked like I was wearing purple fishnet stockings because you could see all the veins in my legs when I stood. It was very unattractive. Now I know it was blood pooling. It is worse a few days before my cycle and the first part of my cycle. You seem to have some of the symptoms, so it may be worth trying a poor man's tilt table test and writing down your BP and pulse.

When I pass out, it is for seconds to maybe a minute. I think you need immediate medical attention. Please get some help.