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wilsons66604

First visit with MDS yesterday

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Hi all.

It was a long wait. The day finally came for my appointment with the Movement Disorder Specialist at KU Med.

 

Based on my initial appointments with the local Neurologist, I was unsure if his prescribed treatment was viable. Turns out the meds I am taking are OK. One of the clinic's researchers will be giving me a wrist monitor to wear for a week. This will help to map out my on/off times and give me a better idea on when to take my meds.

 

While my local Neuro said Parkinson's was not inherited,  this MDS quickly came to the conclusion that my Parkinson's was related to my family history and I have the gene.

 

Based on my symptoms (low level of tremor with Myclonic jerks and Dystonia) the MDS suggested that I had atypical Parkinson's.

 

Next I will be going through cognitive testing. The initial testing yesterday confirmed what I had thought... I have memory loss.  

It is possible that I can use the test results to show Social Security that I have non-motor issues.

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Scott,

 

You can most certainly use the cognitive symptoms in an application for Social Security Disability. They will start considering non-motor symptoms of PD at the end of September of this year. Be sure to keep a log of how your symptoms affect your ability to do your job.

 

It sounds like your MDS is getting the ball rolling with neuropsych testing. I hope s/he also orders PT, OT and speech/swallowing evaluations.

 

Dianne

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Hi all.

It was a long wait. The day finally came for my appointment with the Movement Disorder Specialist at KU Med.

 

Based on my initial appointments with the local Neurologist, I was unsure if his prescribed treatment was viable. Turns out the meds I am taking are OK. One of the clinic's researchers will be giving me a wrist monitor to wear for a week. This will help to map out my on/off times and give me a better idea on when to take my meds.

 

While my local Neuro said Parkinson's was not inherited,  this MDS quickly came to the conclusion that my Parkinson's was related to my family history and I have the gene.

 

Based on my symptoms (low level of tremor with Myclonic jerks and Dystonia) the MDS suggested that I had atypical Parkinson's.

 

Next I will be going through cognitive testing. The initial testing yesterday confirmed what I had thought... I have memory loss.  

It is possible that I can use the test results to show Social Security that I have non-motor issues.

 

 

Did the MDS ask for a Dat scan?   If not then I wonder how he determined that you have PD while other people do not get a diagnosis right away?  Is it based on individual experience of the doctors?

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Did the MDS ask for a Dat scan?   If not then I wonder how he determined that you have PD while other people do not get a diagnosis right away?  Is it based on individual experience of the doctors?

I had already had a DaT Scan in April this year. My local Neuro ordered it for me.

(notice my avatar image. that's my scan)

 

MDS did confirm with me that the meds were helping my symptoms.  I thought one of his statements was interesting.

When my wife asked if he thought my many joint pains were Parkison's, he said "...if the pain goes away when on <<meds>>, then yes. they are symptoms."

Edited by wilsons66604

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Scott,

 

You can most certainly use the cognitive symptoms in an application for Social Security Disability. They will start considering non-motor symptoms of PD at the end of September of this year. Be sure to keep a log of how your symptoms affect your ability to do your job.

 

It sounds like your MDS is getting the ball rolling with neuropsych testing. I hope s/he also orders PT, OT and speech/swallowing evaluations.

 

Dianne

Dianne,

I mentioned the new Social Security guidelines and he was familiar with them. He agreed that the cognitive test would certainly help to present a case for non-motor issues.

MDS did not order any other therapies. I assume since I am not presenting any noticeable motor issues yet. When asked about help with swallowing, he said there was nothing to do. Just be careful. I thought that was an odd response. 

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MDS did not order any other therapies. I assume since I am not presenting any noticeable motor issues yet. When asked about help with swallowing, he said there was nothing to do. Just be careful. I thought that was an odd response.

That's weird, obviously I don't know your exact situation but my Neurologist sent me to an SLP to help with my swallowing and I can now eat things I couldn't before. Also are you having trouble with liquids? Becuase if you are than liquid thickeners can help.

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That is a strange response. I've also seen a Speech/Language Therapist and had a couple of swallow studies done. I was given mouth and tongue exercises to do. Your MDS is at KU? Usually big teaching medical centers have a full range of services. Have you lost your arm swing? That's an early sign of PD and one of the first things addressed when I started PT in 2011.

 

Dianne

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That's weird, obviously I don't know your exact situation but my Neurologist sent me to an SLP to help with my swallowing and I can now eat things I couldn't before. Also are you having trouble with liquids? Becuase if you are than liquid thickeners can help.

 

 

That is a strange response. I've also seen a Speech/Language Therapist and had a couple of swallow studies done. I was given mouth and tongue exercises to do. Your MDS is at KU? Usually big teaching medical centers have a full range of services. Have you lost your arm swing? That's an early sign of PD and one of the first things addressed when I started PT in 2011.

 

Dianne

 

This place at KU is listed as a PD Center of Excellence. I figure (hope) they know what they are doing.

 

I had mentioned that my symptoms are mostly non-motor. It's pretty hard for anyone to SEE what's going on in a short office visit.  This may explain my need to wear a wrist monitor for a week. They want to measure my motor symptoms over a long period.

 

The doc had me walk 20' and back then had me walk toe to toe.  My gait and arm swing are ussually fine and that held true. I did have a lot of trouble walking toe to toe. I kept falling to the side and had to rely on wall to stay upright.

 

I was surprised at his swallowing response also... When I looked over to my wife, she was actually holding a pamphlet she found on his table. It was titled Speech & Swallowing treatment.

Before i asked about swallowing, he had told me he thought I was Atypical and we were discussing my clognition (cognitive problems). I got the impression he assumed my swallowing wasn't bad enough to worry about and we needed to focus on my memory.

 

 

I realize that I can't have the complete answer/solution to all my problems in 1 visit.  I just as soon have my cognition issues treated first. The thought of dementia worries me more than anything! I can handle the physical shit if I have a clear mind. 

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Scott, you're right. He may need the data from the wrist monitor to determine how you symptoms play out over time. For the difficulty doing the drunk test walk, NPF will provide you with a wallet card to show to law enforcement should they pull you over. It says, "I am not intoxicated. I have Parkinson's Disease. Only special people like us can get that card. :-P

 

More will be revealed, as they say. I hope the neuropsych testing allays your fears about dementia. Not all PWP develop dementia, and it would be rare to develop it this early. You may have mild cognitive impairment now and never develop dementia. I have difficulty with short-term memory and with concentration if too much is going on around me. My neuropsych testing showed no evidence of dementia.

 

In response to miracleseeker's question about whether your doctor ordered a Datscan, prior to FDA approval of the Datscan in early 2011, all PD patients were diagnosed by clinical examination alone. 

 

I will be interested to hear what your wrist monitor shows. Keep us posted.

 

Dianne

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Hi Wilson,

 

Glad to hear you finally saw your MDS and I certainly echo others' comments about the swallowing.  Also glad your wife attends your meetings with you; always excellent to have two minds absorbing information and asking questions.  I feel like DH and I are on a similar journey in that his motor symptoms are quite mild (although they're enough to have gotten us this far in our "exploration"); we're much more anxious over the non-motor symptoms.

 

DH and I "finally" have an MDS appointment set for February 2017.  Like you, we're going with an NPF center for excellence for a number of reasons, not the least of which is that we already go there for DH's autoimmune retinal disease and it's easier on us to have our travel-related visits in one location and to have the medical information "automatically" available to all treating physicians (at JHU).

 

Met with our dx'ing Neuro. yesterday for a f/u since we have many questions borne of our "research".  He actually ended our meeting saying our "time was up" (meaning I was asking so many questions that we went way over the allotted time for the appointment) and I completely understand, but I refuse to apologize. As I told him on the way out, we believe in actively and very deliberately managing our health which means we ask for his (and other experts' valuable input), but WE will make the treatment and management decisions.  We won't just "blindly follow doctor's orders".  He seemed to appreciate that although he was surprised we  hadn't yet had the DaTscan (not our hold up, the testing center never called us back) and we hadn't yet started Azilect - our decision and it remains our decision "until" the motor symptoms become bothersome enough to effect meaningful/joyful life.

 

Regardless of what your MDS says, I encourage you to make a list of your top 3 (or 5) concerns and make sure s/he addresses them to your satisfaction.  I wholeheartedly believe most if not all MD's (and MDS's etc.) are doing what they think "we want them" to do by giving us their expert advice.  I also think we (as advisees) tend to think/expect MD's will address the things that need addressing and tell us if there's something to "worry about" or "address". The problem is they don't really know who we are (our social and medical systems really don't promote that - how can you get to "know your patient" in a 15-60 minute interview once every 3-6 or even 12 months?).  They also don't live in our bodies or manage our lives we do and that means we tell them what's most bothersome and needs addressing while we also ask them for their expert interpretation of tests and evaluations that may explain or foretell a symptom to be addressed.  If they don't provide a satisfactory amount of information, we keep asking - understanding that they are often reluctant to say "they don't know" but sometimes that's exactly what they need to say.  DH and I don't expect that "science" has all the answers and we certainly know that everyone's journey is unique so "one size" answers don't always "fit all".

 

Sounds like you have your top concern (cognition) being addressed.  Good for you and good luck, we're sending you positive energy for a "positive outcome" - meaning "minimal" cognitive impairment that can "easily" be addressed and doesn't progress.  Make sure you get your swallowing concerns addressed too - being "worried/bothered" by this could easily exacerbate "clognition" and improvement in swallowing could be "easy" to affect with some exercises and minimal adjustments to eating habits?  DH also has swallowing challenges which are attributed to a small haital hernia and "Shatzki's ring" (?) but I'm not convinced there isn't more worth exploring and working on so we'll probably push for an SLP eval. once we see the MDS.

 

Sorry for the long post, you sharing brought to mind many thoughts.  Wishing you the best always.  When you have more to share, please do, I look forward to reading your posts.

 

LHG

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Thanks Lonnise.

After the diagnosis, I was in a fog. I had no idea what to expect as far as treatment. The local doc prescribe some of everything and said take them. I have since learned and have been able to communicate with the doc in a manner he could understand.  I basically had to tell him to shut up and listen!

 

My new MDS is supposedly one of the 'best in KC' so I was glad to get into see him. He did spend more time with me and he listened...until my time was up :-)

I am now recalling when MDS said in a perplexed manner..."I think you have Atypical Parkinsonism" I've got the expert stumped and will give him another try in 6 months.

 

FYI

Just before the MDS visit, I increased my Azilect to 1mg. I think I've just adjusted to the increase and now it seems like all my meds are staying "on" (most of the time) !

Edited by wilsons66604

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Did the MDS ask for a Dat scan?   If not then I wonder how he determined that you have PD while other people do not get a diagnosis right away?  Is it based on individual experience of the doctors?

 

Actually, some of us did get a diagnosis right away, and a dat scan was never mentioned.  I had the good fortune of diagnosis by a neurologist, an oncology brain surgeon, and then finally, my assigned MDS, all through Johns Hopkins.  They had specific things they looked for, like slowness and difficulty getting up from a chair, slow movement in general, tremor (and the history of how it advanced), one arm not swinging when walking, and other things they know to look for and ask about.  My MDS watched me like a hawk as I performed things like touching the tip of my nose with my finger and then touching their finger that they were holding up.  Did some things with checking joints and with feet.  The MDSs are trained well in what to look for and then put it all together for diagnosis.

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And don't forget PD dementia is not like Alhzheimers. PD affects mainly the executive function- decision making etc. Still, not pretty and I agree, scares the hell out of me too, although I know my risk is lower as YOPD.

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My husband was diagnosed by a neurologist at his first visit and never had a Dat scan. I read about it on the forum regularly but I don't even know what it is. I will have to google it. 

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The DaT Scan is fairly new. The scan helps by giving an idea of how much dopamine is being produced in the brain. The results of my scan were "Severe Parkinsonism".

Based on these results, AND the positive reactions to Carbadopa/Levadopa, my Neuro was convinced I had Parkinson's Disease.

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I wonder if a doctor would still diagnose you with PD if your DAT scan came back negative?  Dr Okun said people who take C/L with a positive response could have other neurological problems or just have a placebo effect.  This is complicating stuff.

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I wonder if a doctor would still diagnose you with PD if your DAT scan came back negative?  Dr Okun said people who take C/L with a positive response could have other neurological problems or just have a placebo effect.  This is complicating stuff.

I wonder too.

Only time will tell. I'll deal with the symptoms as they come.

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Thanks for the link, Patriot. Couple of points:

 

 

"Of note, studies have suggested that experienced clinicians can diagnose PD with greater accuracy than formal diagnostic criteria. Therefore, until definitive validated diagnostic markers are available, clinical expert opinion will be the gold standard diagnostic technique in life."

 

--Suggests to me that if diagnostic criteria and expert opinion are in conflict, preference should be given to expert opinion (i.e., dx from MDS).

 

"A benchmark for an absolute exclusion was occurrence in less than 3% of true PD…"

 

--Implies that 1-2% of true PD cases may present with an "absolute exclusion," such as normal DaT scan. Presumably, this would be early in the disease process. Rare, but with a few hundred forum members, it should turn up a few times.

 

The overall intent of the diagnostic criteria seems to be distinguishing PD (esp. early PD) from *more* serious conditions (such as MSA, PSP, others), rather than reassuring patients with normal DaT scans that there's nothing wrong.

 

As you've pointed out many times, there's a lot worse than PD out there--PD-like symptoms (esp. severe ones) with a normal DaT scan prob. isn't good news...

Edited by ShopGuy

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--Implies that 1-2% of true PD cases may present with an "absolute exclusion," such as normal DaT scan. Presumably, this would be early in the disease process. Rare, but with a few hundred forum members, it should turn up a few times.

 

I seem to recall at least one forum member mentioning they have had a normal DaT Scan but still have Parkinson's.

 

 

I was also under the impression that DaT Scan would rule out Atypical Parkinsonism such as MSA etc.

however...

My MDS told me that he was not going to rule out Atypical in my case.

 

I listened to the MJFF webinar last Thursday "What are the other Parkinsonisms" and I am now wondering...

Do I have an Atypical version?

The symptoms of Cortocobasal Degeneration sure sound like they fit me.

 

Parkinson's seems to have gotten much more complicated since my mom lived with it 30-40 yrs ago.

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