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Struggling with Dx denial


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#1 metfan31

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Posted 18 November 2013 - 02:39 PM

So for those who have not read one of the dozen posts I have already said this in, here is my background:
Have had symptoms of PD for a couple yrs now just didn't relize it. Early this year I started to get symptoms that were troubling me more (mainly cognitive ones) as they were impacting work and life at home. I started with my family Dr, he said depression, took an MRI just in case, came up clear so we started anti depressant, which made me moody. Switched to anti psychotic which put me to sleep. He sent me to find a specialist...
Saw Neurologist A (Neuro A / she) who suspected PD on first exam and order DaTScan. Between exam and Scan we corisponded after I read more on PD, and she reassured me her suspicion was only a slight one, and she wanted to rule it out. So when Scan came back "normal" her imediate reaction was to say probably not PD. I had done research on DaTScan and expected to see two large fat semetrical comma shapes on my scan when told it was normal, but that was not what was there. First they were not semetrical and 2nd lower section of one 'comma' was barely visiable line, the other it was clearly there but still a thin line, this appeared to be normal in images of people in their 60s (I'm 33).After further corispondance she agreed to re-examine me and discuss my scan. She quickly dismissed the scan upon discussion saying she bases Dx on exam, and she was not seeing enough evidence to Dx PD at that time but encouraged I seek a more expirienced opinion.
Which lead me to Neurologist B (Neuro B / he) who upon advice of Neuro A I did not discuss her Dx or lack there of with but presented my story, symptoms, MRI, and DaTScan. He imediately recognised my resting tremor as Parkisonism-like, and pointed out a reduced right side arm swing I was unaware of. He let me know that this could be PD so we should find out. He told me my DaTScan was not conclusive either way, it neither proved or disproved PD as there is too much variance between person to person based on age and genetics one mans normal is anothers abnormal. He said the true gold standard test for PD is a trial of Carbidopa/Levodopa (Sinemet), and if it works it is PD. I asked if it would help with memory loss and brain fog, he said maybe.
So I got my meds and started the trial. That was when I first posted here to ask what to expect. Fairly no one really answered the true nature of the question, as we all respond to meds and PD differently. I also asked Dr. Okun of this site, and what I was expierencing sounded like a dopamanergic reaction to him. At this point I e-mailed Neuro A again with similar questions and to provide an update. That was when she cautioned that Sinemet can produce a placebo effect when symptoms are a product of stress and depression, and suggested I seek a MDS at a famous university about 90mins from my home to get a third opinion if Dxd after Rx trial. At which point my confidence in Neuro A was completely shaken as I felt she would never admit that my Dx was PD at my age no matter how many specialist I saw. Neuro B is not a MDS but has been treating PD for 30yrs now and seems to know his stuff. After taking Sinemet for 6 weeks I had my follow up with him. At this point there was clear symptom relief when on meds vs off meds, even my brain fog cleared (which was last symptom to find relief). So he Dxd PD and had me start adding Azilect to my meds, two weeks into taking Azilect I had very little wear off from the Sinemet, I felt normal 95% of the time. Then I had a night out with the guys, did some drinking, smoked a cigar, stayed out way late. The next day I was hit with all my PD symptoms back with avengence and a cold. Thanks to the cold I was barely back to baseline again when I saw Neuro B again. We discussed switching off Azilect as I cannot afford it and trying Eldepryl which he said has more side effects but works similar to Azilect. Well when I first made the switch my Sinemet seemed to wear off more quickly like whatever the Eldepryl was inhibiting helped but would come back worse when the flood gates were opened. I gave it a week and noticed no real improvement so called Neuro B who upped my dose to 2x daily on Eldepryl, about a 1.5wks at 2 dailey I have finally noticed I am not getting much Sinemet wear off, and that brings us to today.

Wow I'm long winded....

First I barely remember what some of my symptoms were like before meds, I didn't start journaling until a few Sinemet doses in (advice from SarahJo here actually). The tremor I still get when stressed or tired and generally at the very end of the day. The joint pain I get on and offfor the past few years, seems less frequent and diminissed but it is hard to say, I think it was worst when I quit Azilect and started Eldepryl. The cognitive issues are hardest to recall, but I can I feel like my old self again, and I know for a while there I thought part of me (or my mind) was MIA and never returning. I find the idea of placebo unlikely with the flucuation of my symptoms, and the dramatic Cognitive recovery (when I found nothing to suggest Sinemet helps with this). Yet the voice of Neuro A still haunts me, I tried to inquire about an MDS at this University but was told the wait for an appt is half a year (nothing new here) and they wanted all sorts of back ground from my referring Dr. Neuro A would gladly give her input but then they would likely not think I was worth seeing, Neuro B knows he was a 2nd opinion and is already treating me and I do not wish to challenge his Dx with him. For now the meds are working so I decided to just go with it. But the more I read on this forum the more I wonder did I make all this up, is it all in my head, do I have somatization and not PD. It doesn't help that I would perfer somatization over PD, and that Neuro A never Dxd PD, and seemed more sure I don't have PD with every e-mail. Maybe she just wanted to be done with me after a point. I am happier w/ Neuro B, he is a shorter drive and actually went to the same University Neuro A seems in love with. I wonder if he ever swapped notes with Neuro A or if he just assumed she thought I had PD based on the fact I was seeking a 2nd opinion on PD. I'm sure in the telling of my story to him he could have inferred that she didn't Dx me, but it was never said. Part of me feels I am still very much in denial, so much so that when I read storys of undiagnosed on here that sound similar to mine, my first thought is that it is all in their head. I read other posts on here discrediting Sinemet trial to Dx and it makes me wonder all the more.

No one on here can say I have or do not have PD, and truth is whatever someone tells me I want to take up the counter arguement. I guess I am just venting, or feel I need to share my current state of mind so others don't misread my posts as someone who is certain to have PD. I have read so much about PD these last 6 months I could write a medical journal on it, and yet I can't say that I know what I'm talking about. Maybe I am just a crazy person who is just a seveare hypocondriact, who also cannot spell or type worth a lick. Part of me wants to go off meds and see what happens, another is affraid that if the brain fog returns I won't be able to clear it up again before it costs me my job. I hate PD. I hate depression. I hate somatization. Depending on which of my 3 Drs over the past year you talk to I have one of them. Neuro A never Dx Somatization but described what sounds like it and said she thought that was more likely than PD. I got the term from this forum and googled it.

I prayed prior to Dx that I would get the correct answer the same day I was Dxd, and that I would accept that answer. I guess it is just the whole idea that I have to accept that answer for the rest of my life that I did not consider. What will it take for me to get closure? I fear I will be uncertain until it progresses to the point I can barely move without meds, and even then part of me will blame the meds for making me dependent. Sorry for carring on so long here I just don't know how to find peace of mind today.

So Confused

Richard

#2 PatriotM

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Posted 18 November 2013 - 05:11 PM

He imediately recognised my resting tremor as Parkisonism-like, and pointed out a reduced right side arm swing I was unaware of.


Did you know that reduced arm swing was a symptom of PD before being told you had it by the neurologist? If not, then how could it be caused by depression or somatization?

I didn't know anything about PD before I saw the neurologist that diagnosed me (except, of course that people with PD shake). When he told me that I had PD, I was shocked - not that I had PD but that he diagnosed me so quickly. So, I asked him what was his evidence that I had PD. He laid out a very convincing case including resting tremor, reduced arm swing, differences in finger exercises and foot tapping, dull facial features (PD mask), etc. I didn't know that I had reduced arm swing or that reduced arm swing had anything to do with PD. I also didn't know that I had dull facial features (PD mask)or that dull facial features were a symptom of PD. Those facts convinced me that the neurologist was correct and that I did have PD.

My point is that if you had symptoms that you didn't know were symptoms of PD, I don't see how they could be somatization.

Edited by PatriotM, 18 November 2013 - 05:14 PM.


#3 christie

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Posted 18 November 2013 - 06:33 PM

Richard, we've all been there. Most of us are still there, so please know you are not alone. Most of us doubt our diagnosis.  Many of us are still confused. And our confusion is not fuelled just by denial but also by an exhausting diagnosis process, including  conflicting doctors' opinions, equivocal test results, constant fluctuation of our symptoms...Even when we do get diagnosed in the end, we still don't know what to believe.

 

The diagnosis of PD remains  a clinical diagnosis. Although there are several PD-mimics (including psychogenic parkinsonism), an experienced movement disorder specialist can easily differentiate between PD and other disorders. And although there is no single sign or symptom specific for PD, many experienced neurologists are able to diagnose PD just by seeing a patient walk into the examination room !!

 

In my opinion, the only answer to your frustration  is to pursue an additional opinion from a very experienced MDS. just to put your mind at ease.

 

PS: An alternative diagnostic imaging test to the famous Datscan is the infamous transcranial ultrasound (TCS) . Much more patient-friendly, much cheaper, much safer (no exposure to radioactivity involved). Widely applied in several countries, mainly Germany. Patients with PD have increased echogenicity of the substantia nigra (the area affected in Parkinson's), as compared to normal controls. A positive TCS may support  a  clinical diagnosis of PD with (more or less) 85% certainty.

 

http://www.ncbi.nlm....pubmed/16874758


English is not my first language !

#4 metfan31

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Posted 19 November 2013 - 08:15 AM

Patriot, I believe I was aware that reduced arm swing was a symptom of P, but not 100% sure. I also had no idea how one could tell if their own arm had a reduced swing, I mean the sec you think about it you can conscieously make it swing or hold it still. Whether or not I had an idea that it was a PD symptom is not as telling to me that I was unaware that it was my symptom... if that makes sense

Christie thanks for your wisdom and insight. I have also felt that seeing an MDS may be the best way to get some closure, but also fear the added uncertainty it may bring. I was unaware that many PWP felt this way at one point.

My biggest problem right now is I cannot get out of my head, all I think about is all PD all that time. I count down each day waiting for it to end like the next morning I will awake from a nightmare, but instead I just awake sore and stiff and again start trying to move the day along...

Richard

#5 Jlc

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Posted 19 November 2013 - 11:11 AM

My biggest problem right now is I cannot get out of my head, all I think about is all PD all that time. I count down each day waiting for it to end like the next morning I will awake from a nightmare, but instead I just awake sore and stiff and again start trying to move the day
along...


Hi Richard,

I was going through the exact same thing for many months and still struggle with this from time to time. I used to look forward to sleep as I knew that it was the perfect getaway. Cbt therapy might help you with this, but there are a few other things that have helped me, that might help you.

There is an individual by the name of jorge lacoste who has had parkinson's for over 30 years. He has a few videos on YouTube. One is called "if it's broke, don't fix it", and the other is called something like "message for people with parkinson's". Watching these videos really helped me with my thoughts of parkinson's.

Another thing that helps me is to live one day at a time. Try to start making the most out of each and every day and also, try and think of at least one thing that you are grateful for each day.

I also have a few sayings that have helped me. You might recognize a few of them.

1. Pd is life altering, not life threatening.
2. Fear is a choice.
3. Don't wish for a lighter load, wish for broader shoulders.
4. You only can't, if you don't.
5. A calm sea never made a competent sailor.

You have helped me a lot over the last few months. I was surprised to see that you have gone through a very similar situation to my own. I appreciate all of your advice and sincerely hope that something in this post can help you.

James

#6 metfan31

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Posted 19 November 2013 - 12:38 PM

Hi James,

Thanks for telling me about Jorge Lacoste, I watched a couple videos, he has a good perspective. I wish I knew what my PD gift was, but took him over 20yrs to find his. Perhaps the positive I have is this forum, to be able to share and help and have friends who know life is worth living even when you're suffering.

To be fair I'm not in that bad of shape psycally or mentally, but just in a funk. Not sure if it is the meds or the PD, but life has lost its flavor, I'm just going through the motions watching the clock for the next event... These meloncoly time have a tendency to work themselves out, I just need a distraction.

Thanks too for letting me know my advise has made a difference, sometimes with all the posts out here I wonder if anyone is listening.

Richard

#7 metfan31

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Posted 21 November 2013 - 12:00 PM

These are images of my own DaTScan.  I look at it once a month or so and try to see the 'normal' or abnormal in it.  Sometime wish I was better at reading these types of things.  Anyone else who has had a scan, how does mine compare?

 

10980864784_830d7bb4dc_m.jpg


Edited by metfan31, 21 November 2013 - 12:52 PM.


#8 PatriotM

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Posted 21 November 2013 - 12:58 PM

The orange ones would have made a good Halloween mask.  Very scary with the glowing eyes!!!



#9 metfan31

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Posted 21 November 2013 - 02:30 PM

figure005_r.jpg

 

Looking at this image I seem between Mild and Moderate. IMO, as I am not an expert.



#10 Jlc

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Posted 21 November 2013 - 03:08 PM

If only they could replace those 2 kidney disease beans with 2 non faulty ones Hahaha

#11 Jlc

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Posted 21 November 2013 - 03:51 PM

Ughhh autocorrect... Kidney beans, not kidney disease beans.

#12 christie

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Posted 21 November 2013 - 06:26 PM

Richard, a Datscan (as your images) is not directly comparable to a PET scan (as the Parkinson's images in your second post).

Interpretation of these scans can be done only by a specialist (neurologist or nuclear medicine doctor), and preferably by an experienced one. The obtained images are evaluated not only visually (qualitative assessment) but also quantitatively (using automated software). Only grossly abnormal  scans are evident to the naked eye of a non-specialist.


English is not my first language !

#13 metfan31

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Posted 22 November 2013 - 01:59 PM

Christie,

 

Perhaps I should clarify again more in here.  I have discussed both sets of images above with both fore-mentioned Neurologist.  As a PET scan is easier to look at and shows more definition it was the best example that I found that shows a similar shape to that of the region of the brain in question.  Both tests look at the same area of the brain and use the radio-active tracer.  Both my doctors agreed with me and we all were able to look at the images with our naked eyes, (consider the pictures are much larger on my computer than I am able to post here) and see the similarities. I am not hoping for the automated software analysis on here, I already know that considers my scan normal.  As I stated in my original lengthy post above, reading these scans is far too subjective and not an exact science.  Radiologist are probably the most and least specialized Doctors there are.  The same radiologist that read my Datscan, reads x-rays for broken bones, and ultra sounds for tumors, they have a set margin of expectations and are looking to see specific criteria.  I am sure there are some Radiologist that specialize in areas of the body such as a brain, and maybe even a few that focus on one disease like PD, but the sad fact is unless something is life threatening these sorts of high specialized doctors are harder to get to spend ten mins on a Scan deemed normal by a regular radiologist than it is to get an appt with an MDS without a PD Dx.  In other words my current scan will never be read by a experienced specialist as you suggest.  

 

But this all said that is not what I asked for above.  I just wanted to share what I saw, and ask if others with a DaTScan and PD Dx (such as myself) have images similar to mine instead of the "grossly abnormal scan" images available online.  Purpose being as I said in the title, I am struggling with Dx denial, and besides Neuro A's lack of Dx the 'normal' DaTScan is the only other piece of evidence that I have that suggests I do not have PD.  Neuro B has addressed it quite well for me but I really want to find out from others here (in their experience) if they  have had similar scans/results.  

 

I have a Doctor and I tell him all my doubts and concerns, I come here for supplemental support, not sole support.

 

 

 

Smiling on the inside

 

Richard


Edited by metfan31, 04 February 2014 - 10:06 PM.


#14 christie

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Posted 22 November 2013 - 04:12 PM

I try hard not to make/take any posts here personal, but sometimes the replies I have seen are a little too dismissive and preachy.  I propose that if all a reply is set to accomplish, is to discredit another member's of this forum's opinion or point out flaws in a question (without attempting to answer it) that the post be rethought before hitting submit.  I think it was said very recently in another post on here that the negativity is getting to be too much, and we are here to support each other not diminish (any aspect of) one another.  I recognize I am not innocent in this and this very post is a little negative, but I have admitted my faults and am making an effort to improve.  I hope others can see their imperfections as well as they can address mine.

 

Wow, that reply of yours should teach me a lot. So disappointing.

 

Somebody should have indeed rethought before hitting submit. And that's you Richard. What are you talking about?

 

My intention was-as always-to help you, not "point out flaws", "discredit your opinion" or whatever.  My  intention was to point out that the interpretation of these scans is very demanding and challenging, and can be done only by a specialist. What's so wrong, "dismissive" or "preachy" with that?

 

My apologies for trying to provide my unnecessary support. I promise you it wont' happen again.


English is not my first language !

#15 metfan31

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Posted 22 November 2013 - 04:48 PM

Wow, that reply of yours should teach me a lot. So disappointing.

 

Somebody should have indeed rethought before hitting submit. And that's you Richard. What are you talking about?

 

My intention was-as always-to help you, not "point out flaws", "discredit your opinion" or whatever.  My  intention was to point out that the interpretation of these scans is very demanding and challenging, and can be done only by a specialist. What's so wrong, "dismissive" or "preachy" with that?

 

My apologies for trying to provide my unnecessary support. I promise you it wont' happen again.

 

 

I think the issue here is that I don't see the helpfulness or support in stating that "interpretation of these scans is very demanding and challenging, and can be done only by a specialist" when all I asked from anyone here was, "Anyone else who has had a scan, how does mine compare?" and then I provided my personal opinion of mine... So yeah when you throw a bunch of facts out there about scans and make no attempt to answer the question I actually asked, that is dismissive and preachy; as my question was dismissed and facts were preached to me.  Sorry if you cannot handle your own medicine and having someone tell you like it is instead of sugar coating it.  For the record I read your reply last night and decided to sleep on it, and yet still today it troubled me and I was still compelled to explain my POV. As far as no longer providing "unnecessary support" those are your words not mine, you have had plenty to contribute in the past and been supportive in many ways. Your responses do have a tendency say things that are often difficult to listen to and I actually applaud you for this, whatever I or anyone else in here is dealing with PD or otherwise, it isn't easy and a lot of the times the correct response is not easy to digest.  My issue here as stated above is that I didn't say "hey please read my scan and tell me if you think I have PD cause I don't believe the experts...." if I had said that, your reply would have been perfect. Sorry if I hurt your feelings but it gets a bit frustrating when you ask a question in a forum and no one answers it or even attempts, and then it gets buried by jokes and someone replying as if something else was asked entirely.  Did you stop to think before your next reply? Did you think that maybe I was more hurt by you brief response about how scans are read because I respect your opinion and what I got was facts that I already knew?  And yes stating to obvious to someone (when they didn't ask) is offensive. Now I would have preferred to send this message to you privately but I respect your space.  If you wish to continue this and work out our bad mojo privately please feel free to message me directly.  


Edited by metfan31, 04 February 2014 - 10:08 PM.


#16 christie

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Posted 22 November 2013 - 06:00 PM

First, do no harm. That's my first and main concern  when I write in this forum. Both as a patient and as a doctor.

 

I understood your question. And,  as I've told you before, I more than understand your anxiety and frustration. I've been where you are now, and it's not a happy place. And i hate seeing you-or any other patient-make the same mistakes i did. Like  asking myself questions i couldn't possibly answer, not even in a million years.. is my diagnosis correct? should i have more tests? should i have a datscan? are these scans 100% accurate? what happens if my scan is negative? If i don't have PD then what do i have? am i causing this to myself? etc.... The only sure way to anxiety and depression is to constantly worry for things you have no control over...

 

"Anyone else who has had the scan, how does mine compare?". The ONLY correct answer to this question is that your scan cannot be compared to anyone else's scan. ANY other kind of reply, like "yes, it does look a little like mine" or "no, mine was different" would only mislead and confuse you further. Is that what you want?

 

If my English sound a bit "rigid" and formal to you, it's probably because English is not my first language.

 

PS: We are fine. You can always message me directly. And there's no need to delete any post.


English is not my first language !

#17 Elmstreet

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Posted 22 November 2013 - 06:02 PM

These are images of my own DaTScan.  I look at it once a month or so and try to see the 'normal' or abnormal in it.  Sometime wish I was better at reading these types of things.  Anyone else who has had a scan, how does mine compare?

 

10980864784_830d7bb4dc_m.jpg

i looked at some datscan images that are considered normal and look very similar to yours... im starting to question how accurate this scan is, or if it really lands on the hands of who is looking at it.



#18 metfan31

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Posted 22 November 2013 - 06:10 PM

Elmstreet mine was considered normal, and to Christie's point they are difficult to read. Basically from what Neuro B told me there is a lot of subjectiveness in reading them, unless you have advanced PD the scan can not reflect. I found one interesting site that show various control scans, all normal. All look very different. The one that looked the most like mine belonged to people 30 yrs older than me, and the site even states that slow deteriation is normal with age. If I find it I'll post it. FYI PD meds can make the scan less accurate.

#19 Jlc

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Posted 22 November 2013 - 07:06 PM

"it gets a bit frustrating when you ask a question in a forum and no one answers it or even attempts, and then it gets buried by jokes and someone replying as if something else was asked entirely."

Sorry dude. Didn't mean to upset you.

#20 metfan31

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Posted 22 November 2013 - 10:56 PM

"it gets a bit frustrating when you ask a question in a forum and no one answers it or even attempts, and then it gets buried by jokes and someone replying as if something else was asked entirely."

Sorry dude. Didn't mean to upset you.

 

hey James,

 

It was a whole culmination of things, none the least of all PD.  I get cranky, moody, and was beginning to feel like no one cared to attempt to answer the true point of my question.  I hope my frustration did not offend you, truth is humor is the best weapon against PD.






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