After four years of being told I have "possible PD" and being treated with Mirapex and Sinemet, I will finally have the answer that I have been searching for. It was a fight to get my insurance to finally agree to pay for the procedure, but I know that the fight was worth the peace of mind that the DaTscan will provide. I will be fine, no matter what. I have lived the past few years believing that I had PD. If it turns out that I don't have it, it will be a bit of a shock to me. It would mean that new diagnosis would need to be explored. Not that that is a bad thing, it just isn't fun feeling badly and not knowing the cause.

We are having a significant storm here in the Pacific Northwest. If you could pray for safe travel, and that my testing procedure goes well I would appreciate it. If you don't pray, positive thoughts or good vibes will be very much appreciated.

Thanks,

Evonne

I just got home from having my DaTscan. It was very simple. I got there and they had me drink some special solution that was to protect my thyroid from the radioactive injection. About an hour later, they called me back to put in the IV. They got a nurse to do it because my veins can be tricky. It took her three tries, but the third try was the charm! Then, the DaTscan solution was directly injected into my vein. It burned a little, but not too bad. I was done with that part and they told me that I was free to leave and to be back by 2:30. I went to my favorite mexican restaurant for lunch. The snow was falling like crazy and I had to clean my windows all off twice. Then, I headed back to the imaging place where it was warm! They called me back and had me lay on this long, flat table with my head in this little holder. It was an awkward position and kind of tilted my head back. He taped my head to the thing that was holding my head, just in case of a sneeze or cough. They told me that they would do a five minute scan, followed by a thirty minute scan. After the first five minutes, I had him put more pillows under my knees because my lower back was beginning to hurt. Then, I was scanned for the additional 30 minutes. I felt myself falling asleep twice, and I woke myself up with a little jump. At the end of the scan, he checked to make sure that the pictures came out well. He said they turned out well. He told me that the scan is fairly easy to read. He said that it will look like a period, a comma, or will be inconclusive. I commented that I hoped mine wasn't inconclusive. He told me that mine wasn't inconclusive. I quietly asked him if he could tell me....but he couldn't since he was not the radiologist! I tried my darndest! In any case, I am hoping to get a call from my doctor's office in the next day or two. If I don't hear anything, I will call. I have a follow up appt. scheduled for January 30th, but I am hoping that I don't have to wait that long.

As far as the radiation is concerned, it should be gone from my body within 13.5 hours or so. I will be fine to watch the kids tomorrow. To those of you that sent well wishes or called me....thank you so very much!!!! It was nice to be reassured and wished well. For all of you that prayed and wished well, but didn't comment....thank you so very much as well!

I had the tech take a picture of me just before he started running the scan. I will see if I can post it here somehow...

Okay...trying to get the picture to show up. If you click on the picture, it will get bigger.

Attached Thumbnails

 

Yvonne,

Glad to hear that your insurance company finally caved to cover the cost of the scan. May I ask how you went about persuading them to change their mind? Did your doctors advise it?

Thanks for sharing info on the procedure. We hear so often of DBS surgeries but not much on other technologies used for diagnosis. Were you required to be off all PD meds for 12 hours? I would assume that but just wondering.

I do so hope that it is not PD. It would be so wonderful to know for sure - I will definitely even pay for one if I must before having any advanced treatments.


Please share what you learn!

Laura

Laura,

My insurance company requires us to go through an appropval process for certain procedures. My regular neurologist suggested that I have a DaTscan and he was the first doctor to submit a request. The first request was denied. From there, my neuro had a peer to peer review with the consulting doctor on the board. The denial was upheld, inspite of the peer to peer review. My regular neuro wanted me to see the new MDS that joined the practice. I did and she performed a levodopa challenge. I didn't take meds for twelve hours or so. She examined me off meds. Then, she had me take a double dose of Sinemet. Although her initial exam with me being off meds did not really indicate anything that jumped out as PD, she was quite surprised that what she thought might be a physiologic tremor went away after taking the 50/200 Sinemet. She still wasn't completely certain though. I have a tremor on both sides, but it seems worse on my right. It could be that I just notice it more because I am right handed. Anyhow, after my levodopa challenge, she seconded the opinion of my neuro and she submitted paperwork to the approval board. It was denied.

I wound up calling the board myself. I basically asked them, in a round about sort of way, what the doctor needed to say in order for the test to be approved. I gathered that it was important to them that the test was to differentiate between essential tremor or PD. I got paperwork from all four neuros that I have seen. One said that I had a physiologic tremor, one said essential tremor, and two said possible PD. The neuro that told me that I had ET had prescribed medication to treat it. The medication didn't help me. I made them aware of that. I faxed them directly all of the records from all of the neuros, as well as the information from my pharmacy. Then, they got the information from the female MDS that showed that I responded to the levodopa. To them, that indicated PD, not essential tremor. Then, I brought up that levodopa responsive dystonia had also been brought up as a possible diagnosis because stiffness and chronically tight muscles are some of my worst symptoms. So, I believe they requested more information from both neuros.

That meant that there were three different possible diagnosis' on the table. I stressed to them that I have been going through this for almost five years and have sought the opinion of four different neuros. I told them that I am 36years old and that I would like the scan to ensure that I am getting the correct treatment. In total, I have been on PD meds for two and a half years. I have been on Sinemet for almost two years. Then, I went off on a little tangent in letter form and told them that I was having a hard time understanding why they would deny me this test. I told them that I know that up until now there hasn't been a test that will offer a definitive diagnosis of PD. In the past, the only way to tell with 100% certainty was upon autopsy. I explained that there are tests to tell you if you are diabetic, tests for cancer, tests for MS, ALS, etc. I stressed that the DaTscan IS the test that can give me the answers that I have been searching for for the past four years. It can tell me if I have PD or ET.

I don't know if they just decided to take pity on me or what, but after about two months of going back and forth with them, they finally agreed to cover the scan right before Christmas. The test costs approximately $2800.00. The insurance company will pay 80% and I will be responsible for the remaining 20%.

I didn't have to go off of any meds for the DaTscan. I take Sinemet, Effexor, Lantus insulin and Humalog insulin. There are some meds that you do have to stop before the scan. You can find out more information about that on the GE DaTscan website. I asked how the test is able to differentiate between my own dopamine and the Sinemet that I take three times a day. The tech said that it is different. The DaTscan injection itself is derived from cocaine. The dopamine receptors in our brains are responding to that and light up. That is what I understood, anyways. It makes sense to me. If they are looking at the substantia nigra, or basal ganglia and both sides light up in the shape of a cashew or comma, it is a normal scan. If the sides aren't equal, or they light up like a circle or a period, it is abnormal. This is all just my understanding of things. The GE website is full of information.

I hope that I have answered all of your questions. If you have any more questions, feel free to ask. If what I have gone through can help anybody else, I am all for sharing!

Also, thanks for the well wishes. In my gut, I think I do have PD. If the test shows that, I will be okay with that. I think I went through the grieving and acceptance process when I started taking the PD meds and did see some relief. If the test shows that I don't have PD, I know that will be good. It just means that I will be stuck back in the world of uncertainty again as far as a diagnosis. I don't think it is ET because the med trial didn't help me at all. It made me feel worse. I was told that I also have Fibromyalgia, but I am not sure I believe that either. Maybe I have Fibromyalgia and ET. Who knows??? For now...I will wait to hear the test results from my neuro's office. Taking things one step at a time...with baby steps. I will update when I get the results.

<3 Evonne

My results are in my neuro's office. She is going to call me at 2:15 to give me the results. I honestly feel a little numb right now. I will update in just a few hours.

My Neurologist/Movement Disorder Specialist(MDS) called and said that my DaTscan came back negative for PD. She isn't sold on that because I respond to Sinemet and Sinemet is for PD. She said there is a 10% chance the test is wrong. I could still be in the early stages of PD or I could have Dystonia. She wants to pursue genetic testing for PD and Dystonia. She feels that is the best thing to do at this point. She wants to continue to see me every six months or earlier if needed. She said that I can continue to take the Sinemet and Azilect because it is working to alleviate my symptoms. She said that if this is PD or Dystonia, time will eventually tell. So, I guess we pray that I can have the genetic testing. Otherwise...we just have to wait for time to tell.

How do I feel? Well, just as confused as ever really! PD is such a mystery! I was hoping and praying this would give a clear yes or no answer. It did give a no answer, but just the fact that my doctor isn't ready to shut the door on this leaves me with doubts. She knows that I responded to Sinemet. She saw it with her own eyes. I think that in her gut, with all of her experience...she still thinks PD or Dystonia. I feel in my gut that I do have PD. It's hard to believe otherwise when the PD medication alleviates my symptoms. Honestly, it would have been easier if the test came back just indicating PD. Then, I would know for sure what has been going on with my body. Not that anybody WANTS to have PD, but if the shoe fits...and the meds work??? It really is the uncertainty that is the most difficult!

I said that I would be okay...no matter what the test results came back. I am okay. My ultimate trust is in God. I know that no matter what my diagnosis winds up being in the future, I will be okay. God is with me. I am not going to let worries of what may happen in the future steal today from me. I am going to make the very most of each and every day that God has given me because every day is a gift.

Thank you all for your love, support, and prayers. It carries me through the tough days. If you feel it in your heart to continue to pray for me, please do.



Love to All! xoxoxoxo

Evonne

I am glad that your scan was finished. Mostly it is good news when a proceedure doesn't hurt much. I am sorry about the PD. If it were me I would want to know too. I will keep you in my prayers. My neighbor had PD while I was growing up. I remember the symptoms he had to put up with.
I heard about the storm out in your direction. Hope things are cleared up by now. Evidently your part of the country does not get these huge storms as a rule. I live in Fla. We get cold weather too where I live, but not usually below 32. We have already been in the 40's plenty. I was from Chicago land area, so I remember snow quite well.
I hope that whatever your results are, that there is help for your condition. I will keep you in my thoughts and prayers. ginnie

Evonne,

Wow! You must feel frustrated. I would never have thought your doc would challenge a test like that. Usually that is sacred. How long will genetic testing take? Insurers generally don't cover those either, but maybe if she insists.

May I ask why the diagnosis was questioned in the first place? Oh, one last thing to consider is Dopa- Responsive Dystonia. I think there are other forms of primary dystonia with parkinsonism.

As for meds, the fact that they do alleviate your symptoms means just that, in my mind. According to the American Academy of Neurology, around 30% of people diagnosed with PD respond well to levodopa; that is too high a number! This is why we should be given DATscans, genetic tests as diagnostic step. I expect that if we all had PET scans, I would not be surprised by the number that come back norma given that they test for absolutely nothing; simply look for two or three symptoms and slap that idiopathic pd label on us. I think around half the cases of early onset; it is estimated have genetic origin. Why hasn't anything been translated to use in diagnosing? It is clear that experts need more than experience to make these calls.

Sorry to rant, but I cannot imagine going for a scan and having my doctoar question it. This was supposed to give you peace of mind, not add to any anxiety or stress.

Please keep us updated.

Laura

Evonne, I have followed your case with great interest, as it has similarities with mine, though I am a little further down the road than you. I think you have a great attitude to what is happening to you, and wish you well with your treatment whatever your doctors decide.

I too had a possible fibro dx, it was the initial one, for quite a few years. The medication for that never did anything! I also had a datscan that came back negative after over 3 years on a possible PD dx. Afterwards my neuro quoted a 6% false negative figure on the scans.

So frustrating! I was quite gutted by the non diagnosis of PD as I was so sure that is what I have! I had my scan in Nov 2006. Today I am still on sinemet, and until last May stayed on a dx of possible PD. I had a change of neuro, saw him once, and he changed it to mild parkinsonism. Hah! Mild for him maybe, but then he doesn't see me in the mornings!!

My biggest complaint about this hazy diagnosis situation is that none of my neuros have ever seemed to get past that point - where they are looking at the diagnosis and questioning it. I hope that you have a doctor who will look a little further and see you, and what is happening in your life and to your body. I am sinemet responsive, but whatever name they give it, I know what is happening to me is progressive, from the year on year loss of ordinary functioning. If not for that I would have worked on coming off meds. As it is I have tried a few times, but there is a familiar return to what I was before, and I am much better off with them. To me that was the bottom line, that I was functioning better.

Laura writes that she cannot imagine the doctors challenging datscan. I believe that it is important that they DO....... There could be all sorts of reasons why there can be that false negative. I wonder too whether there are false positives, because we are all so different, and because brains are peculiarly individual, they are not like broken bones.

Taken off meds by day five I returned to my pre-diagnosis, pre-treatment self with a bit more. As rigidity and slowness are my thing, it was not fun. A bevy of doctors poked and prodded me, tested my reflexes,took me through the usual neuro stuff, and some of them thought PD some of them didn't, some of them felt cog-wheeling some of them didn't. It was funny seeing it happen, made me realise that so much of it is subjective. A good neuro though has an instinct for what he is looking for, he isn't looking for the textbook description, he is looking for something familiar that he recognises.

My main neuro at the time did one of those tug test things, you know, where they walk round the back of you and give you a sudden tug to see how you balance is - well he nearly had to catch me! So a week later he told me about the false negative thing, and was calling it 'your PD'. Because I had three demonstrable signs out of four. And that's how it has been since. This year I started getting wavy twisty arms when I walk, and some head movements. I guess I have got off lightly, I am nearly nine years on sinemet and have worked hard to keep it as low as possible.

I guess they have a lot to learn. My parkinsons nurse is the best, she says it doesn't matter what name they give it, what matters is my quality of life.

You say in your gut you feel you have PD. The more I have been with people with PD the more I think that I have too. But this is because we are all so different, and yet can speak of the non-motor things that happen with such clarity. That I can recognise from a PWP talking about something that other people do not get in their daily life means a lot to me, and vice versa too. I can recognise others with PD too, because I am living it. The daily stuff that occurs and never quite shows in the doctors office....

One day they will get something that really moves things on, and that will change everything, because some of us will respond to it, and some of us won't, and then they will know they have found part of the puzzle. They will also know that the others of us also need something because it isn't a matter of having PD or not having it, it is a matter of having PD or having something else, that they don't yet have a name for. Which may be a variant of PD or something new entirely. My neuro said something interesting - he said and I quote, 'the dopamine system can be damaged further down'. I wish I had questioned him more at the time!

Good luck with all of this, it's confusing enough anyway without having this expectation that a scan will definitively tell you what you have got, and then it doesn't. Makes your mind go to and fro hunting for an answer. You might not get one, or it might not come soon. But keep that good attitude, it is your best defence!

Lindy