Cynthia,

What a nice message! Thank you. I vacillate between cautious optimism and telling myself that I subconsciously downplayed certain symptoms, so they did not have the full picture. I know that the DATscan diagnoses nothing, but at least it may better equip me to accept things anfpursue the right course.

The doctor suggested that I work with my local neuro to very slowly start tapering off meds. That should be a hoot as I cannot imagine his reaction to the letter from the NIH. I do know that I will take my time with it. At least as long in months as it has been years. I was told it would be really difficult and to adopt a hobby or exercise regime; something to focus on other than how lousy I feel. It was also suggested to just take it day by day and try to focused on the larger goal. What makes this even more a challenge is that I am a single mom to a 4 year old boy.

Interestingly, in referring to med addiction, I had a funny thing happen to show how are mind works in keeping us hooked. I forgot to pack my Requip, and I was so focused on logistics and the screening I did not notice for three days. I suffered no adverse effects, and no decline in motor symptoms. In the past, I have had to go without it for a day or two because my pharmacy was out of stock, and I would monitor the clock anticipating some sort of negative reaction, so sure enough a few hours past my dose time my brain and body would oblige with a deep off period. When I was blissfully unaware, I was fine. At first I wanted to discount the DDS when they said you think that you need more and more meds to feel normal I thought no way it is because of drug tolerance; what I think has nothing to do with it. Well, the Requip story shows just how important psychological dependence is.

As for other aspects of DDS; fortunately I had a short run in with compulsive purchases and binge eating (the eating was way out of character for me), so my life was not upended. The escalated dosing; the doctors believe actually make me think that I am worse off than I really am with my symptoms and doctors
then just feed into it by adding on more meds so it all becomes a vicious cycle.

So, I am happy to report that I am now agonist free going on five days now. I will start tapering down Amantadine, and use the Comtan to counter lowering levodopa levels. It will be interesting to see how things look.

Vicky,

Hang in there. Have you had the DBS for five years? Do you still take meds?
I am not quite sure I follow why your neuro wants you off DBS...is he afraid that after 5 years it may harm you? The very fact they do not know how it works is one of the key reasons DBS is a last resort for me. Levodpa is the devil we know as the saying goes...

Laura

That happens to me too. Sometimes, though, I begin shaking and slowing down and it takes me time to recall not taking my drugs. I had my DBS 8 years ago. I can go without my drugs for a day. I can go without the DBS for over a month. The quality of life with the DBS off is terrible. I wonder if Medicare cannot afford the cost of DBS surgery, It seems to be the least helpful of the choices.

I suppose I shouldn't be whining. A 4 year old daughter. I bet she is beautiful! My older sister raised her son alone. He now teaches Physics at a high school. She did a great job. He has 3 sons. The fruits of her labor are great. Yours will be too.

Sincerly,
Vicky

Laura=

Congrats! We're right behind you!
Was an endocrinologist on the NIH team by chance?

And my own eperience with requip was to quit cold turkey rom 32 mg daily. I wonder what that says.....

Rick

Hi Laura, Since i learned your news yesterday I have had a host of questions buzzing around my mind, this thread is starting to answer a few. One of the things you bring up is the hand tests we all seem to get when we visit with a neuro. This has been a real bugbear for me as it has always seemed to be very different with each neuro, and their conclusions (in the form of notes) very subjective. (Once a neuro grabbed me by the elbow, apparently testing for cogwheeling, and twirled my arms around, very impressively, then wrote in my notes that I was feigning rigidity. I didn't. I just had extremely painful skins cracks due psoriasis on the elbow which he was holding!) So would really be interested to hear about this.

My question is, how did the NIH approach differ? You suggested that they adjusted how you were holding your hands to something that gave a more accurate determination. As we are all dependent on these kinds of measures of our PD symptoms, not only with hands and arms, but also walking, it would be interesting to know more, though I understand that any rote testing of this nature bypasses the point, which is that neuros are observing our reactions to more than just the mechanical tests themselves, and assessing us on their observation, rather than our performance.

I do hope that this will bring you more clarity in finding and achieving a better level of health, that is why we first find ourselves at the doctors, wanting to know what is wrong.

I have an idea that it would be good for you to go back to your earliest posts, and revisit them, to see how your own ideas on PD evolved, and how you viewed your diagnosis then. I seem to remember that there never was clarity in diagnosis for you, and am I wrong in remembering that you had an initial diagnosis of essential tremor?

I am also interested that you remain with a diagnosis of parkinsonism. Is there any indication that the NIH doctors see this as anything other than DDS? Because you certainly had symptoms of something prior to your PD dx.

Given all that is known about what the mind can and can't do, I would still be hesitant in accepting a psychogenic explanation for what you have been dealing with, regardless of any stress that you may have been going through. (I was under pressure some years ago to accept this possibility, to doubt my own experience of rigidity and extreme slowness - and the observation of friends and family! It was suggested that I had depression. Off medication, in the middle of a big return to being stiff and slow and looking completely 'other' than usual, old and very lacking in competence, it was my response to an unexpected 'tug' test that convinced my consultant neurologist of my neurological symptoms. I nearly floored us both by falling backwards like a plank! A neurological symptom, and not a psychogenic one. Leaving things very open ended to the present. My brain is not ready yet for a 'closer examination'!)

Which reminds me that I read somewhere in a clinical tome that a diagnosis of PD is never definitive, and will always remain open to re-interpretation until it is possible to examine the brain so I do not know where that leaves patients, given that some treatments are extremely invasive.

I would agree absolutely with your statements on side effects of dopaminergic medications, as I believe that many of us confuse these with the symptoms of PD from the earliest days of being diagnosed, and we can feel in the initial stages of treatment that we are 'progressing', and this is encouraged by doctors who urge us to take higher doses to get a better response. Our families often see us as 'getting worse' and reinforce this idea, i.e. more means better.

Being contrary, I have always chosen to lower medication as a first step, if getting symptoms that make it seem as though I am getting worse. My doctors don't like me much for doing this.

Now on treatment for the neurological symptoms of Pernicious Anaemia, and having had some diminution of what I had assumed to be signs of PD symptoms worsening (overwhelming fatigue, lower back pain, apathy, brain fog, inability to sleep, immobility, breathlessness, struggle to stand/get out of any chair, limited ability to walk) I will admit to being no more sure that I have PD than you are right now. Some of these things have changed for the better, but others have not changed at all, and I now only know I have 'something' for which, at the present, it is convenient for my medical minders to choose to call Parkinson disease. (The same consultant neurologist who is very expert in PD has absolutely no clue about the neurological damage that chronic B12 insufficiency can cause.)

There is a blind spot that needs addressing in medicine. How do you rule something in, if you are taught first to rule it out by dismissing it as having relevance? Or if you are taught that if you cannot find evidence for someones self-described symptoms, then it is likely to be caused by some flaw in their thinking. i.e. have a psychological cause, rather than a physiological cause.

Across the western world this is now being used to exclude people from disability care, for a whole range of clinically observable conditions, and I am very wary of how it has gained ground in medicine. Is this good science, hubris, or is it an economic argument?

I do believe that it is through cases like yours, where the borders blur, that the most learning can be done. I also, reluctantly, (because I know what loss of wellness can to do us individually in our daily lives) am coming round to the idea that if PD is suspected, then snap diagnoses resulting in treatment with the kind of drugs used in PD, based upon brief observational tests and a dopamine challenge are not the way to go. Even when they follow other clinical investigation. Neurologists are not magicians. A possibly better approach would be a period of intense observation of ability to perform daily activities, and a further period of observation with no treatment at all, combined with a radical programme to exclude other causes, appropriate scans and perhaps in the future real-time scanning to see what is actually happening within the dopaminergic pathways. In the long term this would, I believe, limit diagnostic mistakes and ensure that those who do have PD will not spend years trying to find out what is wrong with them. And ensure that those who don't have PD do have a mechanism of finding out why their bodies are malfunctioning.

Good luck with it all, I do hope that this all signifies a return to health for you and that the path to understanding your body's needs will be easy and beneficial.

and may i ask what doseage of requip you were taking?

how was the decision to go cold turkey on requip made rather than reduce it gradually? that seems pretty drastic. was there any discussion to taper down the C/L and the requip simultaneously?

i can't tolerate agonists so after 11 years after diagnosis am having to take CL every 3 hrs so wish i could take something longer lasting like an agonist. tried .5mg azilect for 2 days and had reduced affect from CL, go figure. took selegilene for awhile, helped but quit it due to muscle pain, ringing in one ear and higher BP.

willl be interesting to get your DATSCAN results to say the least.

Wine-dark sea? Wine-dark sea?
After reading this thread,
what I really need
is some sea-dark wine.

all i can say is good on you for being persistent and hopefully soon i will be able to welcome you to the "once was diagnosed with pd" club. stay focused and keep track of EVERYTHING! let me know how the daTscan goes. i will be watching

Until we have some research proven biomarkers or diagnostic tests for PD, it will never be valid assessment measures. Most of the main assessment test of every trial design uses the UPDRS. ( see this information - http://www.alz.washington.edu/NONMEM.../VER1_2/b3.pdf )
It has its problems but it has been used 20+ years.

Most all research testing is based on observed performance, leaving too much chance or rater bias (subjective opinion). Our concerns are real when it comes to accurate diagnosis.
Peggy

Amen Sister!! The whole thing is a big mess. Thank goodness MJFF decided to invest 50 million in their Parkinson's Progressive Markers Initiative (PPMI). The early data is already being shared worldwide. It is open for use among all researchers. Hopefully, we will learn more about subtypes, and develop an accurate test for diagnosis.

How can we cure/fix it if we don't know what it is?