Hello,
I am new to this forum, 2 years ago I was diagnosed with severe sleep apnea. I was having neurological problems that at the time were attributed to lack of sleep. One by one doctors started to become concerned and the referrals to neurologists began. Then Movement disorder specialists. I was told it might be MSA. I eventually had a Datscan at Stanford that said I did not have Parkinsons. I was grateful but my symptoms remained. Over the following year every time I would see a doctor for other things they would shift focus and eventually after examination say...sir I know you are here for this or that but I feel I should tel you that I think you have Parkinsonsons and I want you to see another neurologist. It has been suggested that the Datscan be repeated but my insurance feels that another 15,000 dollar test is not justified. The last movement disorder specialist I was sent to said I have or exhibit SWEDDS which I understand to mean that I exhibit the symptoms of Parkinsons without having a decrease in Dopamine. I was also told that I have distonic tremors. I have found very little written on this and have been given very little advice as to treatment. If anyone on this forum has any experience on this matter I would be so grateful.
thank you in advance

I'm not going to comment on your symptoms or give medical advice. However, I will tell you that you are way off on your price estimate for DaTscan. The pricing is more likely in the range of $1,500 to $3,000. GE typically charges the radiologist about $1,500 for DaTscan. Then you have the radiologist charge for the SPECT and interpretation. When I had my Dat two years ago, the charge was $1,600. I had to guarantee payment although I was eventually able to get insurance to cover the full cost. Make sure you get your doctor to file the insurance claim if you're going that route, as their appeals carry more weight than yours.
If someone is telling you the cost is $15,000, you are getting grossly ripped off.

Hello, thank you very much for your response, My figure of 14,000 was based on what Blue Cross California charged Stanford for my Datscan. I got the bill so I know what Blue Cross had to pay...Luckily that was not my bill. I am curently more concerned with how to proceed forward.
thank you very much for your response.
take care.

Interesting issue in the range of cost of the DaT Scan. Mine was covered by my insurance, it was performed at El Camino hospital in Mountain View (not far from Stanford) The cost was $11,000.

providers can put whatever price they want on the bill, the question is, what did the insurance company actually pay? hard to believe an insurance company would pay that much more for a scan.

Maybe it's a California thing, but you can just Google DaTscan costs and will see multiple sites discussing prices anywhere from $1,500 to $5,000. I know for a fact that GE charged the radiologist I went to $1,500 for the DaTscan because I had to guarantee their cost and was given the invoice. Everyone should keep in mind that DaTscan is a drug (ioflupane I-123) manufactured by GE. It's not a procedure, even though we tend to refer to the procedure as "a DaTscan". The drug is basically just a contrast agent.The procedure is a standard SPECT scan. So, if you are paying $11,000 or more for this procedure, it's the radiologist ripping you off for a drug, scan and analysis that should cost less than half of that amount.

I think there was crazy pricing in 2011 and 2012 right after the drug was approved and it was difficult to find radiologists to do it. Today, it's more widely available. Come to the East coast and I can bring you to anyone of 4 radiologists where the costs will probably be less than $5,000.

We've been dealing with PD or MSA or who knows what kind of pyramidal disorder for about a year. Lack of balance is the worst. Lots of doctors visits, no real answers. Bottom line is you can really help those neurotransmitter connections by adding lots of Omega 3 foods. wild salmon, eggs, walnuts. Low fat milk and extra lean beef also help a lot. Also, we learned that you can lose your melatonin, causing sleep problems. And you can lose your seratonin. Both can be replaced with pills. 3 mg melatonin or more (over the counter) 1/2 hour before bed may help you sleep better. Check with your doctor, but these things helped my husband enormously. Good luck!

I am grateful for all the responses..
The cost of the datscan is somewhat irrelevant to me as my insurance (blue cross) has approved a second datscan...Is there anyone on this forum with experience in regard to a diagnosis of SWEDDS? Thank you in advance for your help.