[Tammey]

Just as I am on the cusp of a diagnosis, with everything except MS and Sarcoidosis ruled out, my insurance company has refused to do an MRI with contrast unless it goes to medical review, which will delay the test. They will do an MRI without contrast, which may miss critical information. My medical insurance expires November 30, and my husbands will be able to pick me up, but I may have to wait several weeks for coverage to start. The insurance company is supposed to call me for scheduling, and I am fairly confident the conversation is not going to go well. My issues: 1: My MD ordered a specific test based on my symptoms that cannot be appropriately performed without contrast. 2: How fair is it to ME (the patient) that if an innappropriate test is performed, and I need to get a contrast MRI later, that I should have to go through 2 MRI's instead of one. 3: If they have to put it to medical review, and it delays the test past my termination of coverage date, then they should still cover it, because the test was ordered for a date prior to termination of coverage. 4: If they refuse to cover the MRI and I need another one with contrast later, it will complicate matters with the new insurance. 5: Don't tell me that a medical review cannot be expidited! Grrrrrr!!! Thanks for letting me vent. The symptoms are starting to get to me, and I still can't use my hand well.

My PMD has been so wonderful to me about this, and doing the appropriate testing and follow up, it just figures that the insurance would give me a hard time. Here's one for Obama care....an insurance company cannot alter a test that has been ordered by your physician, but they can upgrade it to ensure a correct diagnosis. Food for thought.


Tam

[Erika]

Hi Tammey,

That sort of frustration is what all of us could do without; but the reality is that insurance companies don't care about what stresses their policies cause...or the health of their clients. The bottom line is their primary concern .

I'm not absolutely certain on this, but if I remember correctly, the MRI without contrast will reveal sclerotic lesions and abnormalities just fine. The contrast is used to identify/highlight the more active lesions. Thus, an MRI without contrast should provide enough information for a potential diagnosis.

Although Obama care might provide care to more people who up until now did not have insurance, it might also end up producing longer wait times for diagnostics and specialist care due to more people accessing services; much like the situation that we have in Canada.
The typical wait for 'elective' (non-emergency) MRIs in Canada is 5-10 months and the wait to see a specialist can be as long as 2 years. Even to have a fracture surgically pinned can involve a 4-6 day wait .

I waited for 9 months to see my MS neuro specialist for the current bout of this stupid disease and will have waited for 7 months by the time I get the MRI he ordered back in May. Other diagnostic tests that were also ordered in May required waits of 3-6 months to have done.
After the MRI gets done in December, provided that appointment doesn't get bumped to accommodate an emergency for someone else, it will be another 3 months of waiting before I can meet with the neuro to discuss options and potentials for managment.

Over the past 30 years, while waiting for tests and to see specialists, I've learned to deal with symptoms pretty much on my own through patience; and with whatever help I can get through my PCP, naturopaths, chiropractors, physiotherapists etc.
It sucks, but that is the reality.

I wish you an easy path and hope that your current insurance reconsiders. You put forward very good supporting arguments to achieve that end .

With love, Erika

[yeti]

I had multiple MRIs during my diagnosis, but for different reasons (MS wasn't suspected until after the first MRI). The MRI with contrast (which was the last MRI I got) didn't show anything beyond the non-contrast one I got first. Your situation may be different, but a non contrast MRI may show what the doc needs to see. Or you may have to go through multiple MRIs like I did.

Just food for thought, unfortunately it isn't very clear what you should do. I can offer you a hug and some sympathy - frustration seems to be the name of the game when it comes to diagnosing MS.

[ANNagain]

Tammey,

Welcome to NT. There are many good people here and a trove of information. I do hope that you don't need our info but we are here if you do.

ANN

[ewizabeth]

Going through testing and diagnosis is hard enough without the added stress of insurance hassles. I hope you'll get through it ok, and find that you have something benign and easily treated.

[SallyC]

So sorry for your stress, Tammy. When I was in the hospital for 2nd DX, the Ins Co, tried to deny my whole hosp, stay. I cried and then got mad and called my State Insurance regulators anD Voila the Ins co paid, less my Ded. of course.

Ins cos first response is to find a reason to deny.. I wish we could do away with the lot of them.

[Bort]

Contrast is not strictly necessary for an MS diagnosis if there are older lesions that the T2 sequence can pick up, the gadolinium highlights active lesions...however I'm pretty sure every single one of us will have stories of missed lesions and tests not done the way they should be, so there's no excuse not to be thorough. I am an MRI coordinator at a major hospital and our MS protocol always includes contrast unless the patient is allergic.

I feel so bad for you guys in the US with the way your health insurance stuff works

[Tammey]

Thank you all so much for your replies and support...it's nice to know I am not the only one who has dealt with this, and truly saddened that it ever happens to anyone.

I do have some good news! My PCP was willing to back off the contrast, so we were going to schedule an MRI without. (I wanted contrast because I have recent symptoms, and would be more likely to have enhancement on an MRI, which would nail down one of several diagnoses). I contacted the local hospital to schedule the MRI once the insurance preauth was done. I used to work in the Emergency Department as a nurse there, and always knew their staff to be intelligent and truly motivated to take the best care of their patients. When I described my recent symptoms (pain, numbness, lack of coordination, dropping things, weakness nearly to the point of paralysis) the scheduler voiced her concern that the MRI was not approved with contrast. She spoke to the radiologist who simply stated, "We will do the initial scan without contrast. I'll read the scan before she is off the table, and if she needs contrast, I will write the order. The insurance company cannot refuse to authorize contrast if suspicious lesions are seen on a non-contrast scan". Viola! Problem solved. I am scheduled to have the MRI tomorrow. They expidited the scan because they think that a sudden onset of a parasthesia, even when the symptoms are resolving is an issue that needs to be urgently addressed.

To be honest, this was my best case scenario. That has not been my experience in the past, (particularly when diagnosing empty sella syndrome) I had to fight for years for a diagnosis other than "We have no idea what's going on, but your pituitary gland doesn't look right." Long story short, when I got static on this one, I was really worried that we wouldn't be able to navigate it before my insurance terminated.

Then, to add the icing on the cake of my day...my husband received a call from his human resources department, informing him that I would have coverage effective Dec. 2. That only leaves me uncovered for one day! (I will stay in a padded room that day to ensure that no mishaps would cause me to break a leg or something!)

It is so comforting to know I have a place to freak out a little when things are not going well. Nursing trains me to be emotionally measured, analytical, and concise. Today I am a person, a patient, and admittedly a little scared. Any type of neuro symptoms can be really frightening, and keeping yourself from imagining the worst case scenario and staying positive during the waiting game is as painful as the disease. It was great to read all of the informative and encouraging posts when I was finally able to log in tonight. (Lost electric due to snow, thus, no internet )

I was unaware that the wait lists in Canada were so incredibly long. That is truly a shame! I can't imagine making people wait for months on end for serious diagnostic exams and follow up. Most of my employment has been for independant hospitals who are concerned about patient satisfaction, but I did work for the state once. Their systems are "efficient" , sterile and unconcerned with the person. They are concerned with statistics and fulfilling the criteria of patient care models. That said, the models do offer more complete and concise diagnostic tests. However, the system trains staff to be more concerned with the stats, then their actual patient care. They are evaluated most heavily on the numbers, and addressing the humanity of the individual is ignored. That said, there are still individuals in these systems that go above and beyond for the people in their care. I am proud to say my husband is one of them. During his evaluation this year, he was commended for his patient relations, which has made his clinic the gold standard for the area. (he has even made "under the radar" home visits to check on patients who didn't have good support...He goes to one patients house every Friday and brings in firewood for the weekend because the patient doesn't have anyone around to help him on the weekends. I actually have treated this man as a patient in the past!)

The bottom line is that he earns their trust. Today, I have been able to trust this support group, my doctor, and the imaging center, and I am grateful to all of you. I do not feel like I am fighting anymore. I feel like I am a member of a team that is truly concerned that I get through this well. It is easy to lose faith in hummanity...today I regained my faith in humanity.

With deepest gratitude,

Tam

[NurseNancy]

hi tammey,

i''m glad you're getting the appropriate mri. that's a great radiology doc.
i hope you get the answers you need.

looking forward to more of your posts. i'm an RN too; 35yrs NICU.
what kind of nursing do you do?

[Tammey]

I am an ER/ICU/Crisis Psych nurse. (Interesting combo, eh?) Basically what all that means is that in the ER I primarily work critical patients, patients who are displaying mental health symptoms that pose a danger to themselves or their community, and occasionnally cover the ICU. Crisis psych patients often harm themselves, and can be very tricky cases to work. (Especially when that person does not want us to know what they overdosed on, or is not alert enough to tell us) I also teach behavior management classes to employees, and pre-hospital care from Basic First Aid to wilderness first responder. My last job was in management, and I loved the job, but didn't like playing politics with patient care. This is why I am a little freaked about losing function of my arm. I need that dexterity to treat critical care patients, and protect myself from patients who are physically threatening. I was planning on returning to school to be an NP and teach nursing, but that is on hold until this gets figured out. Hopefully I will be in class by Spring.

My cousin is a NICU nurse, and I don't know how you guys do it. There are a lot of miracles in NICU, but there is also a lot of tragedy. Babies make me all warm and fuzzy inside, and I can't imagine losing one. I don't think I could handle it. That said, my daughter was in NICU for 5 days, and without great people like you, she wouldn't have done well, and wouldn't be the beautiful, mouthy, opinionated teenager she is!

Tam