Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
Doubleup

Not Diagnosed, However Need Advise

Recommended Posts

Doubleup - I did have a PetScan, I didn't mention it because it really has no significance; I had it done before the DATSCAN was passed in the US,  FDA as a diagnosis for PD.  The Petscan that I had done was in the experimental phase, although, they said he was accurate for PD.  It was not FDA approved, insurance, did not cover.  Long story short, I was desperate for an answer, and paid it out of pocket, my money and effort backfired. I had to  fly to NYC from Bflo twice. Once for a Dr. in NYC to see me and write a script for the scan and then back again for the scan itself.  The scan came back "normal,"  I was very happy and relieved.  About a year later, I read that the Pet scan is not accurate for early PD diagnosis and it is still not passed by FDA for PD diagnosis.......my "bubble" burst.  Not only did my bubble burst, but it sent me down the "well" yet again...........

There are people that have had the DATSCAN on this site, Dr. Okun, the Dr. on this Forum reccomends it all the time for PD diagnosis, although, I have heard of a few people that have had false negatives.  With that said, I still think it is as good as you can get in diagnosing PD for now; that is, if Dr. has doubts about clinical symptoms and can't diagnose you.

DATSCAN  approval came to US a little late for me, but for you, it may be a good option.

 

Linda -  I can feel the empathy in your words.  Thank you for understanding.  

 

 

Share this post


Link to post
Share on other sites

Thank you for the clarification. I am sorry you went thru such an ordeal for such a mixed result. I believe the hospital that I am scheduled only has PET from what I read, however maybe the DAT is just not on their web site yet. I have heard that in some cases they will use cognitive complaints to have insurance cover PET under Alzheimer's screening however as you said likely pointless in early PD.

I have also heard of "SPECT" scans which is commonly advertised with Amen Clinics, I almost signed up for that however I do not believe they diagnose PD and it's very expensive.

Share this post


Link to post
Share on other sites

I just managed to get a MDS appointment for next Monday! While I am thinking it is likely too early in my condition to get a true diagnosis just yet I am relieved to have this appointment vs December. I will surely update everyone next week and continue to pray for healing of us all. 

Share this post


Link to post
Share on other sites

Got a great MDS doctor that spent a long time with me today. Physically my tremors are unlike "typical" PD however since my symptoms mainly developed after stopping medication he said this is an unusual situation that very rarely comes up. So now we have moved on to a DAT scan which will take awhile to get approved and scheduled. He said this should help guide us...

Then he seemed reserved about using the scan results to make a diagnosis regardless of outcome as he puts more weight on classic PD signs or documented progression of symptoms than DAT scan results. Not sure if that is common practice.

So not sure good or bad news however at least I am more informed, patience and time will likely be the answer here for me. 

Thanks all for listening and hope everyone is well. 

 
  • Like 2

Share this post


Link to post
Share on other sites

Got my DaTscan scheduled for the end of the month. They told me it takes a week for results which is weird as I have read many here that seem to have gotten results on the same day? I am really nervous however at the same time just the way I "feel" has made me accept the possibility of PD and am prepared mentally in a way to hear that result...

PD or not I just wish I had Apathy for anything. I am gettting what needs to get done even with my scattered mind however I am only doing it because it has to be done and of course for my kids. The depression that is present is like nothing I have ever experienced. I see my kids happy and I smile "for them" however internally is almost as if I am not even present. I started welbutrin last week and the first few days did seem to help, yesterday I crashed though. My MDS wanted me to try this and report back. I have to stop taking them before the scan though which will put a little bump in allowing the meds to work for me. Not sure if this is the best med however I will try almost anything at this point.

Prayers and thanks for listening. 

Edited by Doubleup

Share this post


Link to post
Share on other sites

Doubleup, I've taken Wellbutrin and Cymbalta in combination for a long time now, without having needed adjustments to it and with it working so well for so long.

You might ask your doctor about trying it.

Edited by Linda Garren

Share this post


Link to post
Share on other sites

Thank you. I am going to wait for my scan then decide treatment options after that. I have to stop the welbutrin a few days before the test as it is. 

Just found out my insurance won't cover a dime of the scan so that is a big hit. Very expensive test here in CA :( 

I can make payments at least and I suppose if it helps determine any future course of treatment then there is no price on our health. 

Share this post


Link to post
Share on other sites
36 minutes ago, Doubleup said:

Thank you. I am going to wait for my scan then decide treatment options after that. I have to stop the welbutrin a few days before the test as it is. 

Just found out my insurance won't cover a dime of the scan so that is a big hit. Very expensive test here in CA :( 

I can make payments at least and I suppose if it helps determine any future course of treatment then there is no price on our health. 

sent you a PM

Edited by LAD

Share this post


Link to post
Share on other sites

Hi Doubleup,

I empathize with how troubling all the uncertainty can be. But if it were me, I would be very hesitant to pay out-of-pocket for a DaTscan.

Clinical diagnoses by an MDS is very accurate--as accurate or more so than a DaTscan. For example, my PD symptoms are quite mild--a couple weeks ago, I participated in a presentation to first year med students about YOPD. Only about a third of the group was able to see that I had any symptoms, in spite of having just seen an MDS give me a neurological exam and being told (by both of us) exactly what to look for.

Yet, three years earlier, when my symptoms were even less apparent, my MDS was able to diagnose PD in about 15 minutes. Someone who sees PD patients day-in, day-out, with all sorts of different symptoms, gets very good at spotting even early, mild PD. If your MDS isn't seeing it, that's worth really thinking about.

I was offered a DaTscan at diagnoses, and my MDS said they would push the insurance to pay for it. I told him if he was sure of the diagnoses without the scan, that was good enough for me. As it happens, I had a DaTscan this summer as part of screening for a clinical trial (no cost to me)--the results clearly showed PD.

The odds are very high you will spend a lot of money to get the scan, and still have no answers. If a PD specialist can't give you a clinical diagnoses at this point, it seems unlikely medical treatment for PD will do you much good either--there are NO proven disease-modifying medications available.

Exercise and good diet are always good approaches, PD or not. So is financial planning, esp. as PD can mean earlier retirement than planned. If it were me, I'd take the money I was going to spend on DaTscan and put it in my 401k.

  • Like 3

Share this post


Link to post
Share on other sites

I understand what you are saying and believe me I could spare the cash. 

As every PD case is different, my symptoms are currently very strong in the "non-motor" category to the point many days I am non-functioning. 

Not sure any doc would put me on PD meds without major motor functions however knowing if this is PD or not could help direct medications one way or the other to help me "feel better" and get back on my feet so to speak. 

I am also at a turning point in my business affairs as well as some large personal projects that if I were planning for a PD future I would likely rethink things drastically. 

I could wait another year for symptoms to change to save the money however it is difficult to "move forward" in the present so to speak. 

Then I suppose there is the accuracy of the test to consider, from my reasearch however it seems to be pretty accurate. Especially it seems a scan supporting a diagnosis of PD is not argued much. Seems the negative tests are the ones more subjective that sometimes years later the individual has PD. 

Share this post


Link to post
Share on other sites

Hi Double up, I can understand your situation.It is kind of stressful if a PD diagnosis hasn't been done yet.Even with insurance,Dat Scan could still be very expensive.After my insurance coverage last year,I  am still paying off some thousands by installments.Shopguy is right,if you have a good movement disorder specialist,PD could be diagnosed without a Dat scan.My symptoms were very mild,when I was first diagnosed by a neurologist,but the doctor wasn't sure,he suspected parkinsonsm,so he requested a Dat scan.If I had seen a MDS,initially,I might have avoided a Dat scan.I would suggest to go ahead if you can afford to pay out of pocket,because the earlier,you confirm your diagnosis,the better.So you can '"MOVE FORWARD".

Share this post


Link to post
Share on other sites

Thanks Otolorin, I have seen a Neuro and an MDS. My minor hand tremors and some newer leg soreness and calf cramping "motor symptoms" are just not enough to diagnose. He said I would need to keep coming back every 3-6mo to track progress. 

On the "non motor" I have a laundry list. Trouble sleeping, some reduced sense of smell, avoiding any difficult situation, apathy, depression, anxiety, short term memory lapses I could probably go on. I have gotten a better handle on my anxiety this past week or two... The rest remain.

Another odd thing I have noticed is coffee which I have not been drinking much of for awhile now does absolutely "nothing" I could drink water and feel near the same. I took a decongestant also (the good kind) hoping to enhance some smell and zero buzz effect. I used to feel these things and that is literally gone. Very weird and not likely anyone's first complaint here however it is real for me.

Maybe I am just crazy; I'd probably be willing to spend a chunk of money for a doc to tell me that or anything at this point. Pretty lost of what to do without this test at this point, I will have to decide by the end of this weekend if I am going to cancel...

Edited by Doubleup

Share this post


Link to post
Share on other sites

Double up,did your doctor do a levodopa test?This is usually given to see if you'll react positively,in terms of conrolling your tremor or rigidity.A well experienced MDS would diagnose PD at the first visit,by physical examination.You are not crazy,it is the non motor symptoms that causes more anxiety.You've got to try and stay calm.I can tell you,that I have some of the non motor symptoms you mentioned,and I treat them with medications,others I use daily exercises.If you think,by doing a Dat scan,you will get relief,then it is worth it.Take it easy,you are not going to die.

Share this post


Link to post
Share on other sites

No I have not done the levodopa test. He mentioned maybe trying that in the future. I have tried Mucuna Pruriens on my own in low dose on bad days and it does seem to get me out of my funk a bit, however no effect on my tremors. I do believe I would have to at least triple what I have taken for a few days to reduce tremor from what I have read. 

I don't know why my MDS can't diagnose me just yet with other methods. Maybe it's just too early... If I get a 2nd opinion that will take months to get in to see another... I am almost thinking of canceling the scan however I want an answer just as much. I do feel like in 6mo I would likely have the PD diagnosis if I waited for more symptoms... However the uncertainties thru the holidays would be hard and without the full ability to treat my conditions. 

I am exercising and eating well, it's just certain days that I really "crash" so to speak. I feel like for lack of a medical term have fluctuating or surging dopamine. Some days I feel almost normal and literally think to myself "this is ok, I could do this the rest of my life without meds" then a couple days later it takes everything out of me just to get to work and even at that I am only half functioning and avoiding anything difficult. My cognitive side is really impacted and I really hope this improves. Without major motor issues I am uncertain if levodopa would even be prescribed for my non motor secondary symptoms at my age of 44. Maybe an argonist or just trial and error or antidepressants... 

Thank you for all your support. My anxiety is ok right now, I just want to feel better and be "present" for and with my family more than ever.

 

Edited by Doubleup

Share this post


Link to post
Share on other sites

Doubleup - My advice to you is to have the test.  You remind me a lot of myself.  I feel you need the peace of mind and you need it now.  There is no price tag on peace of mind.  Some people can live without answers and take things as they come, some of us have a harder time living like that.  If you need the peace of mind for quality of life, seek to get it.  Without it, you may risk having it affect every part of your life, believe me, I've been there.

 

Edited by ellaangel2
  • Like 1

Share this post


Link to post
Share on other sites

Thank you for the support and encouragement. I guess my only fear is to find out what I am already in the process of accepting possibility of having PD.

So really the only remaining issue is money which is important however even if I can't afford it accurate health information is priceless. Everyone I know and likely everyone on this forum has been subject to less than accurate medical treatment at least once in their lives and likely would give a chunk of savings in those scenarios to get things on track.

I feel like if docs or MDS's put more weight on secondary symptoms I would be diagnosed already however we've talked a lot here over the weekend and are going to proceed regardless of price rather than waiting for stronger physical signs to show up.

If it's PD I am fairly young and will be in an early stage so I at least have that going for me. I will just have to try combo's of antidepressants to overcome my apathy and depression symptoms and see if I can put off L-dopa for as long as possible. Which I am not sure what has worked for others however it seems the depression is caused from low dopamine so without that I am unsure how the depression will subside without L-Dopa? Just wondering about that... 

Edited by Doubleup

Share this post


Link to post
Share on other sites
Quote

I feel like if docs or MDS's put more weight on secondary symptoms I would be diagnosed already however we've talked a lot here over the weekend and are going to proceed regardless of price rather than waiting for stronger physical signs to show up.

I believe one of the reasons an MDS would hesitate to diagnose based on non-motor ("secondary") symptoms is that there are many conditions that can cause apathy, depression, cognitive issues, etc. Whereas bradykinesia plus rigidity, esp. in combination with resting tremor, is more specific to PD.

Quote

I will just have to try combo's of antidepressants to overcome my apathy and depression symptoms and see if I can put off L-dopa for as long as possible. Which I am not sure what has worked for others however it seems the depression is caused from low dopamine so without that I am unsure how the depression will subside without L-Dopa?

Typically, PD-specific drugs like MAO-B inhibitors, dopamine agonists, and L-dopa don't do much for non-motor symptoms--you'd likely be prescribed antidepressants or anti-anxiety meds for those symptoms anyway. My own experience is that neither the dopamine agonist I was taking, or the MAO-B inhibitor I'm currently on have much effect on my tremor, or dystonia. Bradykinesia and rigidity responded well to the agonist, at the cost of a few mild but annoying side effects.

I believe others here have had good tremor relief from dopaminergic meds, but it's kind of a crapshoot.

Share this post


Link to post
Share on other sites

Still no real answers... Got my DatScan results "abnormal" my reduction is a  moderate reduction "bilaterally" meaning symmetrical. This not consistant with Parkinsons at this time. So I definitely have something going on with my dopamine system, I guess the question is if it is from the meds and this will improve or will it continue deteriorate as in PD?

Doc is recommending a retest in 6mo.... And/or see how I feel in 6mo. 

Edited by Doubleup

Share this post


Link to post
Share on other sites

Doubleup, something is definitely wrong,that's why your DAT Scan is abnormal.Are you saying,maybe the antidepressant you are taking,contributed to the DAT Scan result?For the doctor to have requested a retest in 6months,that's waiting for likely progression,if it is PD.PD can sometimes start with non-motor symptoms,followed by motor symptoms  as the disease progresses in some people.I guess you don't have any choice,but to wait.Does wellbutrin help with your non- motor symptoms?

Share this post


Link to post
Share on other sites

Doubleup,

Congratulations on not being diagnosed with Parkinson's. I'm sure that must be a load off your mind. You still have some waiting to do to see if your symptoms will clear up on their own.  Try not to focus on everything and remember to excercise.

Dave

Share this post


Link to post
Share on other sites

Otolorin, yes I agree something is wrong. If the Dat is accurate it just isn't following the progression of PD. So either some other Dopamine disorder or Parkinsonism. The theory now is that past meds I was on is maybe blocking some of the Dat binding of the test reducing what is showing up. I somewhat disagree just because I have so many non motor symptoms to support the accuracy of this test yet my movement is fine so far... besides odd tremors

Perhapse with time this will either progress to PD or if this was caused by something I exposed myself to I may just be stuck with an impaired dopamine system. 

I just started back on meds for my non motor symptoms as they wanted me off al meds for the scan. We will see if they help, thank you all for your support and thoughts. Frustrating process and frankly can't afford a second scan. Just going to see how I feel in 6mo at this point

Share this post


Link to post
Share on other sites

Ellaangel2

If you read the beginning of this long thread I was on Adderall for ADD about 1.5 yrs before this and most of my symptoms began shortly before stopping these meds and the stronger ones after. 

My gut tells me the neurotoxity of the Adderall or something else has damaged my dopamine system over time. Which may or may not lead to PD.

Howerver the doctor is optimistic and has found some supporting information that if a DatScan if done too soon after stopping these meds that the Dat binding maybe reduced due to the prior meds binding to the Dat transporters blocked the tests binding and thus the test may not be accurate.

So would have been best to wait on the scan longer I suppose, I really have nothing else to do now besides eat healthy, exercise and wait this out. 6mo feels like a long time...

I just need to find a way to get my depression down and find a little joy in each day so I can stop my constant thinking about this. It's easier on the days I have decent energy levels... 

Edited by Doubleup

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×