Consultation with Duke ALS Clinic

[Nikki J]

fee for each service versus some large non refundable deposit. Again it was an anecdote by someone on the internet. I can’t vouch for its veracity

 

[wtici]

Thanks Nikki, it is very helpful to know!

 

[lgelb]

You can negotiate a cash discount for a neuro consult, for less than the travel insurance and coinsurance would cost, most likely. If your parents have an accident or something like that, they could be seen at any safety net hospital ED. If you buy travel insurance, there are probably pre-existing condition exclusions in the Plan Certificate that you have not seen yet.

 

[wtici]

Spent whole afternoon researching this INF Premier plan and Duke international patient service. Sent a few questions to the insurance broker, it turned out they don't have any plans that will cover ALS. Even if this plan does, after $1000 deductible, the benefits are very limited for the services she will most likely get.

As for the Duke charges, the full estimate for anticipated services will need to be paid up-front, which sounds like the anecdote Nikki was referring to. However, the Q/A below seems to show some discount may be given

Does Duke Health provide financial and billing services?​

We provide an estimate of the plan of care from the provider in the form of a Letter of Agreement. When the estimate is paid in full and all charges have been processed, a 30% International patient discount will be applied. PRMO Billing and Collections provides this service and can offer itemized statements.​

Igelb, thanks for mentioning the cash discount, it is certainly worth asking the possibility!

 

[Nikki J]

Did they clarify whether you get refunded if you don’t have everything anticipated? The office consult would be definite but the estimate could include things like an emg, mris and blood work. I know you are translating her records. Can she bring discs of mris?
I am sorry ALS is excluded but not surprised. I am glad you asked questions to find out in advance

 

[wtici]

Mom is getting a new EMG next week, once I submit her medical report and they give me an estimate, I will clarify about refund and discount.

Thank you all! Will keep you posted.

 

[Nikki J]

Don’t be surprised if they want their own emg especially if the exam and other things are not clear. It is quie common for ALS specialists to do this especially if they don’t know the previous examiner. With something like an mri they can look at a disc and see if the technique and views are what they need. They can’t with an emg

 

[wtici]

Oh, no! Mom said it is quite uncomfortable, I don’t want her to do it again. How expensive an EMG here? If not outrageous, maybe she can cancel her EMG next week and do it here instead.

 

[Nikki J]

It isn’t a slam dunk it would be required but a definite possibility Costs vary a lot. I know someone who had one at mgh ( which is notoriously expensive for rack rates). It was an ALS diagnosis emg so extensive and several years ago over 2000 though they paid less because of insurance

 

[wtici]

Her clinic is in a university hospital and the university is one of the top universities of the country. Hopefully Duke will accept the EMG test report.

I am working on her medical record translation. Along with ALS, she was also diagnosed with Sjögren’s syndrome at the time. She had labial gland biopsy and ocular surface examination, how relevant are those test report? Do I have to translate them too?

Also, a month after her diagnosis, she had an emergency neurology visit due to the increasing pain on both her lower limbs. She had EKG and abdominal ultrasound which were both normal, do I need to translate those reports in details or a conclusion summary is enough?

 

[Mary2]

When Emory wanted to do a second EMG on my husband the doctor was very concerned about who was going to do it. She said she knew one person near our home whom she trusted. She really wanted us to come back into Emory during COVID so she could do the EMG herself. And so we went to Emory. My point is the doctors are picky about who is doing the EMG.

 

[MJT]

Hi Ting, My husband was diagnosed in September last year. We live in Raleigh and are working with Duke ALS Clinic. I would start by calling Duke ALS and explaining the situation. I got my husband in earlier than the standard 3-month wait by calling every Monday morning to see if there were cancellations. Duke will help diagnose ALS, treat symptoms, and enroll your mother in a clinical trial if she is eligible. Dr. Bedlack is world-renowned, and Duke ALS was treating patients from every US state, Europe, and Brazil when I casually asked. The clinic is only open on Tuesdays, but the specialists work until they see every patient, sometimes late into the night. Durham is 2 hours from Charlotte, so you will need to stay overnight. I would be happy to help you find a hotel, navigate the appointment, and explain what to expect. I don't know how to do so, but if someone could tell you how to PM me, I'll give you my phone number so we can talk more easily if you'd like. My experience is that it would be well worth the drive to get your mom into Duke ALS Clinic.

 

[Nikki J]

If you wish to take up MJT’s kind offer wtici pm your contact info to me andI will forward it as I do not believe you can directly pm MJT

 

[wtici]

Mary, thanks for chiming in about your EMG experience here. It seems to confirm Nikki’s point earlier.

MJT, your first hand experience of working with Duke Clinic is certainly very valuable and relevant. We have a couple friends living in Cary, we can stay with them or find a hotel on our own. But thanks for offering additional help beyond the consultation.

Nikki, how do I pm you?

 

[Nikki J]

If you click someone’s name a profile box comes up and you press start a conversation but I just messaged you you should have a notification top right