I visited today with a potential new MDS. Upon examining me, he concluded that he could not definitively diagnose me with PD and begin treating me based on what he observed. It was a given that I was "on" with Sinemet, and I completely understand where he is coming from given that I was asking him to treat me based on someone else's diagnosis. He noted that even in an "on" state with the mega-doses of Sinemet that I take, he expected to see more definitive signs of PD. He wants me to come back in for testing when I'm drug free for 12 hours- this should be oodles of fun.

I'm a little stunned by this but also respect the wish to essentially re-diagnose me. Of course, I have many questions and hope you will chime in with what you think or your experiences and knowledge!

- Anyone have a similar experience in being re-diagnosed?

- Were many of you tested for Wilson's Disease?

- Have any of you been asked to move your tongue from side to side as fast as possible in a neurological examination? This was new to me and I've never had it done as a PD test. Anyone know why this test is done?

-How many of your neurologists are open to you using herbal supplements?

-Is it the norm for neuros to be reluctant toward prescribing off-label drugs that may be therapeutic in PD?

Laura

Thanks to Greg W. for one of his brilliant PD bon mots "chemical camouflage". He's also responsible for the beaut "clognition".

I have mixed feelings when I hear doctors say to come in off meds.This means full dystonia for me and it inflicts suffering upon us. Even danger. If he wants to see you off, let him make you comfortable somewhere in his building/location where you can wait till you go off. OR videotape it and take it in. Perhaps your symptoms allow you to still do this but it bothers me that he is asking for great suffering on your part. i know others who have been asked the same thing. Have you ever had reason to doubt your diagnosis?

Transporting or traveling while off is potentially dangerous in several ways.

My doctor only mentioned curcumin as a possibility.

paula

forgot to answer a few questions. i have not had to show a tongue wag, but was tested for wilson's disease, which showed borderline high copper but not the rings [forget their names] that you have to go to the opthamologist to be tested for. The doctor said he wasn't concerned about the almost too high copper, said someone may not have washed the container well enough. Are all of our illusions of trust in confidence and safety going to be shattered? geez

Hi Paula, why not ask the doc to re-do the copper levels tests if he/she does not believe the one that was completed? to disregard it as having been incorrectly assayed and not have a re-do makes no sense to me. why did he/she order the test in the first place if he/she was not going to take any action based upon the results? shheeesh. Wilson's is a real disease. madelyn

madelyn

i'm embarassed to say this was in 1992 when i got diagnosed, long before i knew any better than to just accept what a doctor says.

paula

Madelyn,

The new doctor wants to screen for Wilson's Disease as I've never had it done. Is it standard to have this screening before a definitive PD diagnosis?

this leads to Paula...I didn't really doubt my PD diagnosis until now because my original dream team never screened me for Wilson's Disease despite an atypical presentation of first what was thought to be ET. This original neuro also thinks it's okay for me to be on a lot of Sinemet and has not one concern over long term repercussions.

I didn't really go for a second opinion, but I guess I can understand why he needs to reassess me in a more "natural" state. I'm not sure, like you said, I can't just do it between med dosages as levodopa has such a short half-life. He was very considerate in asking me to do this- I would get an 8 am appointment and take meds immediately after exam. I also think that missing a Mirapex dosage will skew the exam as this has made my off time worse.

I am just afraid he will "stage" me and I'm not sure I want this info. As for travel, I plan to have a family member drive me- I never get behind the wheel when "off" meds.

I wonder why, given that my symptoms have befuddled (another) neurologist with PD expertise and affiliation with a major research university, they are still so reluctant to prescribe PET scans as further confirmation? It's funny that we have so much technology but still have made almost no advancement in diagnoses. How different is this from being observed by the famed Dr. Parkinson himself or Charcot? In the end, the docs are still just observing, taking notes, and disagreeing. More dithering. I cold seriously see seven neuros and get seven different opinions. It's ridiculous. At this point, I just want someone who will work out a better treatment plan.

Laura

Good morning Laura. You aak a lot of questions in the middle of the night, girlfriend! Here are my 2 1/2 cents such as they are.

"Anyone have a similar experience in being re-diagnosed?"
Nope. My research MDS reviewed my history/reports, examined me thoroughly, and gently, reassuringly concurred with my primary MDS' dx of PD. I say gently because the formal PD dx--while also delivered most delicately--had nonetheless come as a shock. And reassuringly because i was haunted by my research on MSA given what I then saw as dramatic cognitive sx.

Not for nothin' but, of all my many docs, the 4 docs who did recognize my PD were women. The first was a rheumatologist I had consulted last year to rule out other things the day before I expected the first incompetent neuro to finally grasp my condition. She, the rheumy, looked up from her notes following my exam, and said very pointedly, "Tell me precisely what you want to know TODAY." She didn't need to say another word. That same day my PCP said that it looked like PD to her. The other two are my fabulous MDSs. Also a (female) physical therapist picked up on the cogwheeling movement and encouraged me to "be persistent" searching for the cause of my misery. She clearly knew.

ALL of the other docs over the years (neuros, PCPs, orthopedic surgeons, psysiatrists, chiropractors, pain management docs, others) missed and, interestingly, most all were men (sorry guys). I say this not to be contentious but to suggest that when a young woman presents with undiagnosed PD, men may be less likely to listen thoroughly, less likely pick up on gynecological/sexual sx (or even ask about them), more likely to dismiss PD sx in women as psychogenic, more likely to let different communication styles obscure pertinent facts, and more likely to hold fast to his original mis-dx despite emerging sx, never even considering that he may have been mistaken or to recommend a SPECT scan or a visit with an MDS. Glad to get that off my distracting chest...apologies to all the great male docs I haven't met.

"Were many of you tested for Wilson's Disease?"
YES and my perception is that it is standard.

"Have any of you been asked to move your tongue from side to side as fast as possible in a neurological examination? This was new to me and I've never had it done as a PD test. Anyone know why this test is done?"

I can't recall if I was asked to do this but have a hazy recollection from my reading last winter that it is a measure for corticobasal degeneration.

"How many of your neurologists are open to you using herbal supplements?"
Mine is neither against nor for it...she's a jury's-out-till-the-research-is-confirmed kind of person generally. I think what's important is that she respects your interest and is willing to use her expertise to accommodate that. (Eg...when you tell her you're contemplating adding 5-HTP (serotonin precursor) does she know that it's a bad idea to take it with SSRIs? If she isn't familiar is she receptive to the info you've brought along for her? Is she likely to look it up and call or email her findings? My guess is that most neuros think supplements have little or no effect other than placebo and so aren't too ruffled or inspired.

I don't know anything yet on off-label scripts so I look forward to reading others' replies. And I've heard some interesting reports of Viagra being used off label for women. I'll have to ask my Pfizer neighbor about that one when I rally my courage...any decade now!

Your suspicion that "there are no neurologists who don't fall in line with the current mode of flow chart medicine" is probably not true. There are likely a handful. Half of those are likely brilliant. They're the ones who "market skim" taking no insurance and sporting a high-wealth patient base. The best most of us can hope for is finding a neuro who is willing to listen, stays current in the field, and who recognizes that s/he must truly partner with the patient if she wants to help in any way. One possible solution is to do what I did: add a really smart naturopathic physician to your team (mine had specialized in neurophysiology) and ask him/her to call your MDS. Then keep both updated on one another's recommendations. If neither is your PCP, keep her/him in the loop too. BTW, there is evidence-based naturopathic medicine and it has its own research initiatives...more on that later.

I'd speak to your agonist fears but I am suddenly terribly sleepy. Good thing I'm not driving 6 kids to a soccer game right now...

One last thought. I completely agree that we must have more progress toward improved treatment and toward a cure. That said, for those of us who can only function on the meds, they are a godsend. If they are an addiction they are like insulin to a diabetic...easier to wrap your mind around if it keeps you alive. Any of us who resent the imperfections of current PD meds (and don't we all?) might want to talk with my mom who nursed her YOPD mom in the 1950s pre-levadopa. I say this not to make anyone feel guilty for our valid frustrations but to remind us that life-altering advances have and will continue to happen for us and for future generations. Change is the nature of life.

Have a merciful day,
Rose

Your doc was testing your hypoglossal nerve, Laura. If you read up on it please explain it all to us!

Hi Laura,
i did have a similar experience to yours in that i got diagnosed in spring 03, and was v glad to finally have a name for what was wrong with me and a drug that worked, then was moved to a different neuro, who looked at me and said 'i see no signs of parkinsons' - initially i thought that he was referring to sinemet being effective, but another appointment down the line and he repeated this and said that he thought he would have to return me to a fibro dx. to be honest i was absolutely distraught by this, as i had for the first time in about 8 years been feeling properly mobile, and really feared that they would stop prescribing pd medications for me. it took nearly two years to get this cleared up, i did have the scan and the results came back negative, though i never actually saw the scan itself, and it was over 2 months late in being returned...eventually i insisted on a second opinion - went into hospital for them to observe me off meds for 2 weeks, after 5 days was discharged, pd was breaking out all over the place! i saw the new neuro in his clinic - he told me that contrary to most info on scans they were not 100% accurate, around 6% were false negative, and I probably fell into this category. nobody has disputed the dx since, though my records carry the words 'possible parkinsons disease'. i had an apomorphine challenge test too that was inconclusive, due to severe nausea and sleepiness - a lot depends on timing with that one, and by the time they got to me approx 20 mins late, the effect had worn off, it is v short lived... the best dx method is still clinical observation by an experienced neuro......

like you i am atypical, and had rather a long route to dx, we are the people who do not fit the mould, but nevertheless fit into the pd spectrum somehow.

none of the tests are infallible - my pd nurse specialist who last year reviewed my meds and got me the best results so far said at the end of the day if the medication gives you a better quality of life the name of what you have is less important, especially with pd, which she feels will eventually wind up being labelled as several different conditions, much more specific, in addition to the several different ones there already, and that there is a huge amount more to be done on understanding the patient experience!

well, we know about that, don't we, lol, so try not to be anxious, and bear with the drs while they get their act together!

the tongue test thing was most probably to rule out als, and not anything to do with pd.

good luck with all of it, it can be a long and winding road to what you need to know, and sometimes i think the neuros move even slower than we do

best wishes
lindy

hey Laura - I was checked for Wilson's during my PD diagnosis; I thought it was standard procedure.

As always, I am proud to laud my MDS, Dr. Monique Giroux at the Booth Gardner Parkinson's Center in Kirkland, Washington as a cutting-edge PD care practitioner. Rigorously scientifically educated as an engineering undergrad, Ohio State MD, Yale neurology head resident, Emory trained MDS, she has learned through years of treating patients the value of the holistic approach. She is now beginning a 2 year distance learning degree program as an Andrew Weil Integrative Medicine Fellow, building upon Dr. Weil's expertise in nutrition and living well. I could not be more excited or supportive!

Laura,

I too spent some time nailing down a diagnosis. Told originally I was too young to have pd (53) and if i had had it as long as I thought (3years) I would be bilateral by then. Nine years later I am still not bilateral although i am old enough to have it.

Was checked for Wilsons and had the tongue wag test that i thought was to rule out brain tumor.

My mother-in-law as diagnosed with PD in about 1980 (though I have been told by my MDS it more likely MSA) but she was put in the hospital to take her off all meds and try starting back up one at a time. She walked into the hospital under her own steam and before she left her feet were frozen in a dystonic ballerina toe point. Ultimately her Achiles tendons had to be severed so she could sit in a wheel chair. Granted she was pretty bad off by that point but the rapid withdrawal of meds made a complete cripple of her.

Whatever they tell you, watch out for yourself first and foremost and if you start feeling that it is going wrong, do what you need to do to make it better. We could see what was happening to my mother-in-law but stood by silently because we thought they knew best. Not necessarily so.
Good luck,
Pam