I was recently asked my point in mentioning my recent diagnosis of NOT having PD after 10 years as I struggle to get off sinemet. Below is my answer.

Statistically 1 in 4 of you reading my words dx'd with PD are misdiagnosed. That's right 25% of you. There may be nothing wrong with you or something much better treated appropriately. Who doesn't want a pass on PD? Nobody is going off l-dopa; I'm desperately searching. Does anyone like it?

The Michael J Fox Foundation for PD Reasearch says that about 25% of PD diagnoses are WRONG. http://www.fountia.com/conditions-mi...insons-disease. That's 200,000 people in the US with possibly no or benign disorders and many with dangerous orders better treated other ways. UK data supports this with up to half the 25% having essential tremor (NOT PD) and 16% having Alzheimer's. Then there are TIA's, MS, Strokes, toxin exposure all treated with very different meds and very possibly recoverable if treated correctly or fatal if not treated correctly. http://www.livestrong.com/article/20...as-parkinsons/

Then there is NPH
SYMPTOMS: The symptoms of NPH include gait disturbances ranging from a mild imbalance to an inability to walk or stand; mild dementia that includes loss of interest in daily activities and forgetfulness; and impairment in bladder control, ranging from urinary frequency and urgency to total loss of bladder control. (SOURCE: Barrow Neurological Institute).

Also Fragile X, Lyme www.endowmentmed.org/pdf/updatelyme.pdf, Alzheimer's and Lewy Body http://www.ncbi.nlm.nih.gov/pubmed/20963199, Post here from Stitcher http://neurotalk.psychcentral.com/thread16915.html,

The American Academy of Neurology says agrees with the MJFFPR, 200,000 of the 1million US PD suffers are mis-diagnosed. http://legacy.signonsandiego.com/new...1n3parkin.html

My criticism is that the philosophy for prescribing is flawed since the medical community admits this is a disease of exclusion (as discussed here on forum) yet it is rarely excluded. People aren't seen by their docs off meds. Once I was diagnosed I never saw a single doc off meds until the one that said I didn't have PD. Five more docs now back him up. I can't find a single doctor that knows how to get people off sinemet despite an extensive search.

The Cleveland Clinic which you discuss and Wilfrid Laurier University studies indicate sinemet and agonists are being prescribed too early since exercise works. You agree according to your post. See posts here about PD being a disease of exclusion http://neurotalk.psychcentral.com/thread114303.html Is anyone in a hurry to develop non-l-dopa responsive side effects like diskinesia, tardive dystonia, tardive dyskinesia (most of which become permanent).

John's Hopkins says Parkinson's Diagnosed:
"Persons are diagnosed based on the symptoms they have and the physical examination. There are no standard laboratory tests available although testing is often done to exclude other similar diseases. A significant improvement in symptoms related to taking the medication carbidopa/levodopa is helpful in making the diagnosis since all patients with Parkinson's Disease respond to this medication." A self-fulfilling PD diagnosis prophecy with no exclusionary process. Has anyone seen a doc off meds regularly to evaluate their progression or lack of?

EVERYBODY responds to l-dopa. The body seeks to maintain homeostasis when exposed to sinemet. I do not have PD but cannot stop sinemet cold turkey because I will die from NMS or DAWS. My body has reached homeostasis with this drug just as it would with chronic substance abuse. So now I must detox but nobody knows how. There are thousands of publications but no docs with experience in getting live people off sinemet and keeping them alive. Only dead stats.
http://emedicine.medscape.com/articl...overview#a0104

It is compared in many ways to high long term alcohol addiction (which has a very high mortality rate) or taking ecstasy in the way in which it alters the dopamine receptors in the brain. Can we recover from l-dopa damage? Will my brain ever accept my own dopamine again? I still don't know those answers. http://www.nida.nih.gov/pubs/teachin...Teaching4.html

The NIH says Repeated drug exposure also changes brain function. Positron emission tomography (PET) images show similar changes in brain dopamine receptors resulting from addiction to different substances. Dopamine D2 receptors are one of five types of receptors that bind dopamine in the brain. "Like cocaine and methamphetamines, dopamine agonists work by stimulating the reward pathways in the brain. For this reason, it makes sense that they would engender similar withdrawal symptoms, particularly in those with high cumulative drug exposure." Hence the struggle with DAWS and the addictive nature and permanent damage potential. (Source Weill Cornell Medical College)

Ecstasy users cannot recover their damage and many develop PD. Studies on ecstasy and alcohol show permanent damage, I doubt many people would choose this when taking l-dopa if they didn't need to be. My criticism is for the process of diagnosis and that doctors still don't know how l-dopa works. The diagnostic protocol is 25% wrong agreed by all major sources including the NIH, MJFF, and AAN and other countries. I resent being potentially being brain damaged because only 1 of 13 doctors followed protocol.

I criticize leaving the patient out of the process as in the video "From God to Guide" paula_w posted http://www.youtube.com/watch?v=LnDWt10Maf8 I did get a 2nd 3rd 4th... 12th opinion but only one doctor asked to see me off meds in 10 years and figured it out. Most of the questions I asked about "coincidences" in my own diagnosis were dismissed by my doctors and it turns out I was right.

You asked my point:
1. Symptoms for PD are hallmarks of over 100+ other disorders yet I can't find anyone save for one friend who was dx'd with MS and another diagnosed with Alzheimer's who didn't have it. Both of whom were medicated into having the symptoms of the diseases. Also illustrated in the video I mentioned to paula_w called Under Our Skins where Lyme is being diagnosed as PD and MS and is curable with antibiotics.
2. I count 39 drugs on one web site that cause PD. My medical history can add sinemet to that list.
3. The possible diagnoses are almost uncountable yet PD seems to be what is diagnosed most of the time for any tremor or slowness. 10% of dystonia is thought to be correctly diagnosed http://abcnews.go.com/2020/story?id=124044&page=1,
4. I don't think patients are educated properly about sinemet's dangers (NMS can occur spontaneously and it is addictive) and has short effective life 3-5 years, causes harder offs and Dystonia. Evidence in many posts here.
5. Doctors should be looking to patients not the other way around to find a cause/cure.
6. Maybe PD recovery is onto something-there is a cure if you don't have it.
7. Too many patients are married to their diagnosis.
8. Excessive stress can lead to or mimic PD, MS, Alzheimer's etc.
9. Sinemet caused all of my symptoms - should that be ignored?
10. Since finding this out I learned of many people over medicated for Alzheimer’s and many other diseases when they had Lyme, Dystonia, meningitis, stress, and other things http://neurotalk.psychcentral.com/thread151385.html

I hope people play a more active role in their treatment. If only one person finds they are misdiagnosed then I consider that a success. If this is a disease of exclusion why aren't there any exclusions documented?

Sorry I offended you. In my excitement to help what statistically has to be a large number of people I just think patients should play a more central role. This God-like doctor role seems backward to me. I see no need to get mad at someone trying to help. We are all entitled to an opinion without being attacked. I am well aware what living with PD is like. I did it for 10 years. I am also living proof some people should not have to do so. How is anyone able to judge or find wrong anyone else's feelings especially if they are trying to help.

I also still have the side effect of being manic from sinemet and tend to say too much without intending to. I don't like that but right now can't help it. If nothing else offering hope and alternatives seems a productive thing to do. I would rather know if there was a chance in this disease of exclusion for which I can find no docs with any experience taking people off sinemet. (hence no real exclusionary process) Does anyone know anybody that has been excluded?

I am darn lucky I can now take care of my parents when they need it instead of the other way around. My criticism is toward the provably flawed process that statistically 1 in 4 of you is reading has nothing wrong with you and is suffering as I was. Your families also suffer which is what I take greater exception to. I don't like my family suffering.

The misunderstanding was that I was criticizing sinemet. I was not. I'm criticizing the diagnostic protocol. Why is response to l-dopa the criteria for dx'ing PD when EVERYbody responds to it just like all drugs that cause NMS, DAWS, SS, etc.. like opiates, benzo's, alcohol, ecstasy, & all brain pleasure receptor affecting substances legal or not, that cause immense release of serotonin or dopamine.

I can certainly understand your anger, but have to say that when I looked to see what the people misdiagnosed were found to have, four of the 12 conditions were ones that only a few short years ago were actually called PArkinsons plus disorders, and in many countries are still considered PD variants. MS some times occurs with parkinsonism, and sometimes they occur together, making diagnosis difficult. NPH is not as well-known as it should be but looks very like PD, it should be picked up on an MRI with no problem, so I guess that some of those people were diagnosed a while back before it was publicized. Essential Tremor and PD often masquerade as each other, and are sometimes difficult to differentiate, ET also can come with parkinsonism. Wilson's disease should be easy to spot, Huntingtons and ALS will most usually show themselves fairly quickly, if they do not they are somewhat atypical. A number of these conditions are very much worse than IPD, are faster developing with worse outcomes. Some of them are initially responsive to dopa, and once that does not work there is little else that does.

Many patients are not immediately diagnosed, it can take years of doctors excluding various conditions until they come to PD. If a patient is dopa responsive then they are treated for PD. But mostly people go to their doctor because something is wrong with them. They do not go for no reason.

There are probably many people who have PD with no dx wondering for years what is wrong with them, but someone has brainwashed them into thinking that aging is like that and it is only to be expected. So it cuts both ways.

I know you have had a rough ride, but PD is a very tough disease to diagnose for all the reasons you have mentioned.

It simply is not right to say that PD is never excluded as a diagnosis, there are many who have gone through batteries of tests over many years, during which they did not have an effective treatment, and had a decresing quality of life. This happens because PD is OFTEN excluded on the grounds of the patient being too young, which can mean anything from about 55 downwards......

It is however not greatg to make a sweeping statement such as patients are married to their diagnosis. Initial treatment with dopa gives a dramatic response to people who are showing a gamut of PD symptoms. And doctors look for that, and if it becomes quickly ineffective they usually look for somethings else.

Arguably people should not be treated if they only have a little tremor in one finger, or their symptoms are not causing them any functional problems.

If you truly do not have PD you have been dealt a really bad card, and your struggles to get off dopa are no easy thing.

On the other hand for people who are struggling with the reality of PD and the reality of medication it can be challenging to read your posts. There can be few of us who have not had a good, almost normal, day who haven't hoped against hope that PD was not real. Or that they could turn back the clock.

There have been a number of people over the years who have been thought to have PD who have been re-diagnosed with something different, or had the PD dx withdrawn and people here are always glad for the ones who get away. When you win your battle with dopa we will be glad that you have got away, too.

There have also been more than a few diagnosed with ET who have after years been told they have PD.

One of the reasons that the PPMI study is so important is because eventually it will lead to more subtypes being found, and the 23&me study will help identify those who have a genetic type of PD, and it maybe that eventually it will differentiate in many disorders each with a different type of treatment.

We are still learning, and our doctors are too.

You say that you are improving, and that things are gradually getting better. I hope this continues, and that you are getting stronger. I also hope that you will come to terms with what has happened to you and find some peace, instead of the anger.

Lindy

Sorry if I come across angry. I am not. I am much worse physically now unf. and don't know if that is temporary. I also suffer from the manic part of sinemet and now realize some of my excitement to help is misread. I have mostly non-functional days now where sinemet made them fairly normal. One little sinemet pill and I could do so much but I cannot take more or start over. Also ardent desire for no one to suffer similarly.

I hope I didn't imply life was rosy na na na making it difficult to read. NOT MY intention. Just a deep desire to prevent early sinemet rx's b/c the side effects are bad esp if ur sensitive. & Til ur sure and to get more opinions.

I'm also very scared to find nobody that can help me detox. I am afraid my doc's one week plan will kill me. That's all. No anger, just relief, excited, scared. Sorry the mania came across as such.

Many of the disorders are not worse or PD related like lyme, dystonia, ET, TIA'S, strokes, migraines. Some like Alzheimer's or toxin exposure not well treated w sinemet & could be fatal. I'm referring to the more benign or nothing as it is believed I may be. I so want better for someone else, I never felt I fit. I was asked if I was married to my dx when told I might not have it. That was all I meant. Do we identify too much? I'm just trying to find a purpose in all of this. I sense there must be one. Sorry for shortness I'm back to one handed again. When I'm typing fast obv too much and I got my feelings hurt when I did not criticize anyone intentionally.

I know so well what sinemet can do as u can see - just advising caution. No desire to even report docs...there were 3 that concurred that dose was ok. THAT was what makes me think the whole protocol is wrong. Young people getting sinemet right away. It is complex....many people posting they were boosting doses. I've been there at docs orders. Not good. I still feel I can't be unique. Advising more people see docs off meds ONLY if safe and with doc ok. That's all.

I meant disease of exclusion as in quote from John Hopkins "all patients with Parkinson's Disease respond to this medication." not true..all people respond to it or DAWS/NMS wouldn't exist. That's all there. Also warning it did cause all of my PD symptoms. Now just very slow and cramps with exacerbated tremor & hyperthermia. All DAWS. The intent was & is only to help.

IF YOU are going to quote the MJFF, please find the original info, not some anonymous source. you have just a link to MJFF in your article.

if i were trying to present an argument for something i felt very strongly about and felt was controversial i'd double and triple check my sources, often they aren't accurrate on the web.

boy, you sure are on a crusade.

I'm not quite sure where the 25% misdiagnosis rate attributed to MJFF comes from. I've not heard/seen that number but yes, the number is high.

I'm more familiar with this stat: 15% to 18% of subjects enrolled in PD trials are later found not to have PD. This reflects two things...just how hard PD is to diagnose--particularly in the early stages of disease even by specialists (since they are the ones referring/recruiting "patients" into trials). And, we assume away from specialists and the clinical research setting, the numbers are higher.

This is devastating for patients/families who are looking for answers. It can have a negative effect on optimizing treatment and it means that we are testing therapeutics on a larger than necessary group/the wrong subjects. Bad on many levels.

These challenges underscore the value of biomarkers--for diagnosis and also for measuring progression. MJFF continues to drive this part of the field with over $32 million dedicated to biomarker discovery since 2002 and now the $45 million PPMI study. http://www.michaeljfox.org/living_PPMI.cfm

As you may recall (earlier threads) GE won FDA approval of it's DaTscan product. http://www.prnewswire.com/news-relea...124642448.html
This imaging tool is approved to make differential diagnosis between PD and essential tremor. It will likely gain swift use (it is already being used in Europe and in clinical research in the US) to aid in diagnosing PD. An exciting step forward. (PS--it is an inclusion criteria for our PPMI study that is looking to distinguish markers of disease progression in PD patients/controls).

One additional comment...the idea of l-dopa challenge as a common strategy for diagnosing PD. I'm not a doctor, but I hope the profession continues to improve it's understanding of the current standards of care and we see less of this approach.

I believe PD patients can play a critical role in helping education others. I believe that folks who suspect PD often reach out to known patients in their community for advice/information. Patients can both validate these challenges and provide a sense of context but also guide suspected PD patients to specialists (who now will more commonly have better tools to assist in diagnosis). Hopefully we can improve this situation are around.

Debi

DEBI ,
not trying to be difficult but do you have the link to that 15-17% participating in pd trials not having pd? it would be important to know if that was for the u.s. or worldwide. was that due to misdiagnosis by a neuro or just patients lying that they had pd? is it an old number no longer relevent? i participated in one drug trial for a new agonist and i received a pretty thorough exam to verify i had pd symptoms. also,one has to ask are pd trial subjects representative of the pd population? i don't think they are. i just think there's much more to that factoid than just not having pd.


no doubt better/earlier diagnosis is needed.

Either way, girl, we are all suffering to some degree with this thing, but have to point out that there is more than one view about these things. Some of the PD plus conditions go through people like wildfire, very hard for all family and friends. You are having it tough I know but hang in there and times will improve. Just take it very very slow. I had a taste when I backed down some years ago after only a few weeks where I took more to survive very long days.

You do not have to follow you doctor's I week plan, you can negotiate with him, so long as he can see you are not going back up again he should help you to hold it together.

I know you would like to help so that this doesn't happen to anyone else, but someone might just think this can be done easily, because they do not know.And who knows whether they will be the strong person you seem to be.

The main thing is that patients should really be campaigning for more information at point of diagnosis, that is where it really needs to happen.

People need to be told that these are extremely powerful drugs, and advised to wait and be observed for a few years before going onto medication if possible, to firm up the diagnosis, and to give them space to make decisions that are not a knee jerk reaction to devastating news.

While the best doctors may do this, or maybe they will, it certainly doesn't happen for everyone. The shame about this is that there actually are older drugs that did not have such powerful side-effects, that are able to alleviate things in early Parkinsons - the ones that were there before dopa and DA's, and could be used instead of these heavy duty ones.

I would like to see exercise on prescription for PD, at all stages, but especially early, before the treatments become worse than the disease.

I really believe that patient education is a crucial factor in this. If the empowered patient KNOWS what other conditions can cause their symptoms then they can ask, and insist on being tested. if they don't know they are more likely to be passive patients. Everybody ought to be kept informed from the beginning.

I have to say though that Dystonia can come with parkinsonism, and Strokes and TIA's can cause parkinsonism. Lyme is mainly in the US and needs it's own awareness campaign, I believe that there are tests? Correct me if I am wrong. Migraine should be recognisable to doctors who are worth their salt. Again if patients are informed they can challenge the diagnosis, and as awareness becomes greater and participatory medicine (yea) starts to gain momentum people will feel more comfortable doing that.

When you factor in parkinsonisms from various causes that is a lot of people, and mostly they won't be helped or will only be helped in the short term by dopa. But they are hard to spot, and that is why doctors should be talking to us more, and looking at us more. So that THEY know what they are looking at. On the other hand the literature for doctors is getting better, and sooner or later there will be a spectrum map of this these disorders that will indicate to doctors in a clearer way the best way to treat that subtype.

Who knows, one day they might even decide to treat the root causes instead of the symptoms. (well, something is causing those neurons to die or keel over, or go on strike...)

And I absolutely agree on being advised to boost, I am certain that once the initial 'starvation' has been addressed the dose should be lowered to optimum, not raised, as a first option while still on a very low dose. But that can only be done when it is really early.......

Always drawn back to one fact, and that is that neither they nor us really know. We are all in the dark and guessing, so caution should be the way to go....

Take care, and keep safe, wishing you all luck with this

Lindy

dogma, if you don't have PD, what does your doctor think you have?

Many of us have had periods of thinking we don't really have PD. I know I have on more than one occasion. I would like to offer one small warning to anyone thinking about doing anything dramatic with their medication.

Many years ago my mother-in-law had been diagnosed with PD. She was taking Sinemet among a long list of other drugs and her doctor felt she was being overmedicated, put her in the hospital and pulled all of them.

She walked into the hospital but her legs went into such a spasm that her feet were extended so rigidly she could not stand or sit. Before she left the hospital she could no longer recognize her own son and had to have her Achiles Tendons severed to allow her to sit in a wheelchair. Of course she was never able to walk again.

I realize this story is extreme, but it is true and happened in the course of less than two weeks. So please be careful with self medicating and withdrawing from Parkinson medication. These are powerful drugs and the results from mistakes can be catastrophic.

Hi DOGma, I have sent you a private message. Kind regards, Ladybird.