My mom's condition has some similarities to what D0gma described.

About 3-4 years ago, my mom started showing classic signs of PD -- one of them being the bradykinesia along with the blank stare. She was diagnosed with PD and started with way too much Sinemet (600mg/day) ... she developed dyskinesia, then cut back to about 400mg/day ... still had dyskinesia, and now (on her own, not doctor's orders) has cut down to 100-150mg/day. She takes that dose to get a boost but then can get through the rest of the day at a lower energy and more slow motioned pace. I also feel like she has withdrawal symptoms every day ... when the 150mg dosage wears off after about 3-4 hours.

It seems to me that the slow motion-ness is PD, or at least Parkinsonian, because my mom had it before starting any medication.

D0gma, do you not think that your slow motion-ness is PD? What symptom(s) led to the initial PD diagnosis? Did you have slow-motioness/bradykinesia before starting on Sinemet?

Our goal with my Mom's treatment is to hopefully get her off Sinemet entirely. The fact that she takes such a low dose and is able to function without a continuous dosage gives me hope that we can try to kickstart her endogenous production of dopamine through natural supplementation like NADH, l-tyrosine ... and other precursors. I've heard some studies/cases where this has helped and others where it has not. I suspect that not everyone's root cause of PD is the same, so I think safe experimentation is the only way to find out on a case-by-case basis. I also worry that if she kept taking high (and increasing) doses of Sinemet or any l-dopa, her body would become completely dependent on external sourcing and it would become much more difficult to kickstart any endogenous production of dopamine.

DOgma,

You might find Peter Breggin's book helpful, 'Your drug may be your problem:How and why to stop taking psychiatric medications' [covers l-dopa and specifically PD symptoms caused by meds such as anti-psychotics] and also his book, 'Brain disabling treatments in psychiatry'. He has a few more along these lines. Plug his name into Amazon and you'll see.

Just an update. Still no luck finding a doc with experience. I am down to less than 1/10th the sinemet I was taking and doing BETTER. I won't sugar coat it, it's been sheer ****. If I didn't have a VERY powerful motivation there is no way I would put myself through this.

I am down from 525/2100 minimum per day with additional 1/4 tablet (25/100 sinemet tablets) boosts every 30 minutes for most of the last hour of 3 hour dosing) doses totaling minimum 50/200 mg more. I am on less than 1/10th the sinemet I was taking and feeling better, less symptoms every day, less tremor, better balance, bet5er walking, almost NO more dyskinesia (I’ll explain), no dystonia. Essentially no Parkinson's. I do not suggest ANYBODY do this without a doctor's supervision, nor do I suggest depending on your local ER to save you because even with instruction they will not be equipped. Your goal is to live with or without PD so don't take any risks. (from 12/23/10 to 06/10/11).

I also suggest recording your office visits either on a cheap voice recorder or just set your cell phone in an outer purse pocket. You would be surprised what you pick up later AND how different your records and the doctor's dictation differ from what happened in the office. I also suggest you request copies of ALL of your medical records. Several doctors made some very big errors in their dictation later and this went into my personal file. This is not changeable! So your diagnosis may be effected by personal bias or honest mistake. Some of these docs are honest hard working guys that make mistakes and some are perhaps experimenting (for good or "research" purposes) on their patients because they don't understand this disease.

Go look it up. Sinemet is useful in treating PD for 3-5 years before problematic side effects start. There are so many alternatives to try first like exercise, forced exercise, other drugs, meditation, massage, PT, and hundreds more. Sure you may end u on sinemet anyway but you put a foot in the door for DBS when you take that first pill. I was so close.

I'll post a video I did about a year ago when I thought I had PD. Look at the unexplained way dystonia can be instantly gone by doing thing a different way. In one case walking backward. Doctors and the medical community don't understand how sinemet works, just that it does. They don't understand how aspirin works exactly. Watch and ask yourself, is there another choice before I take sinemet.

I read with great alarm some posts about dosing sinemet. I was in that 1/4 tablet club and getting worse/needing more. Why suffer and move like lava when a pill and a few minutes gives me back ME and I can LIVE?! Because you're possibly falling into the same trap/dream I did. Guilt-fear-hope-why me? And this is some powerful suffering, I get it.

I've been de-toxing on my own with advice from my doc who admits I am a novelty. Nobody knows what to do, how to taper, what to do. I've gone through worse horror since starting detox 12/23/10 than I ever did when I thought this was PD. I essentially have to underdose, suffer, go glacially slow, insane injuries from cramps, and horrifying pain.

I do have a meds alert dog or I wouldn't have been as brave. The ER gave me Valium ONLY. Back to doc-I need direction. This is NOT a fast process and you need POWERFUL motivation. You can go in off meds (ONLY IF DOC OKAYS) and be observed and you should DEMAND to do so if safe. PD is diagnosed based on our reaction to meds. My point is sinemet caused ALL of my symptoms. Unless your doc is good, open minded, and new now and then maybe without a full history. Are we wed to our diagnoses either by docs or do we become so personally wed we would deny the announcement of wrong diagnosis?

According to the literature this lack of diagnosis of NMS/DAWS and treatment even though I took printouts from NIH and CDC with me is what kills people. This is like a dirty secret. If Dystonia and Tremor are symptoms of thousands of diseases other than PD (treatable problems, diseases, benign conditions, curable issues) how come nobody but me is getting "GOOD NEWS?"

It's torture and people die; they have jobs, lives, kids, angry spouses, and feelings that can't be all stopped while they under dose sinemet for months and go through the pain and most terrible frustration in the world. Can taking the lid off the toothpaste really take 10 minutes? Yes so I just left it off for a while or used my chin. Most people think you're nuts. Still in the back of my mind I had that bail out. If I need to do something really important I'll just take some sinemet and poof magic it will wear off.

So my doc suggested putting me in rehab for a week and getting me off sinemet. when he returns from vacation. Since Medicare will never pay for that I thought I might try at home to do something safer but about the same time frame.

There were several days just before Memorial Day that I experienced dyskinesias at times when my meds should be wearing off. I had no idea how to treat that so I expressed some serious concern to my doctor. I ended up overdosing several times in a row on barely any sinemet. It seemed to me I was starting to make some of my own dopamine or I wouldn't be overdosing at a time 2-3 hours since my last dose (when normally I would be wearing off). Now seemed like a good time to reduce dosage.

I spent the next week on very little sinemet over Memorial Day as a result. I took 1/2 (25/100 mg regular sinemet) Saturday to Monday. It was the worst thing I've ever gone through including two shoulder surgeries, two back surgeries, cancer surgery, and a knee surgery. I had a jackhammer tremor that made me really consider driving my car onto my hand to get it to stop. (joking sort of). I was moving so slow that I had to stop wearing underwear-stuck with XL boxers b/c I couldn't go to the bathroom fast enough if I had to move the underwear. Thank goodness I have a helper.

I ate with my hands since silverware was impossible, drank through straws, couldn't drive, use the computer, read, garden, walk, or much of anything. I realized Tuesday night after skyping my parents that I couldn't stand up from my chair. That scared the heck out of me. My function decreased over those 4 days to almost total immobility. I also thought 15 minutes like usual and I would be back. The meds took 90 minutes to kick back in so I could stand up. I had a friend waiting to take me to the ER but I thought I could solve my issues better with instant access rather than waiting hours at the ER.

The next day I went back to a higher dose but still a decrease to (1 25/100 sinemet er & 1.5 sinemet regular to 1 25/100mg sinemet er and 1 25/100mg sinemet regular). I'm going to stabilize at this a couple of weeks here. See if there are times where I have dyskinesias and hope my body is kicking in more natural dopamine. When that happens it would be time to go down again. I don't know what tomorrow will bring but we'll see. I am very determined to get off sinemet.

For those that can wait, try, do your research, don't up that dose until we find out a little more about this filthy little secret. I'll post some video’s shortly. Bear with me. I'm a bit at a deficit today after no sleep but a GREAT day yesterday. I felt for the first time in 10 years like nothing was wrong with me at 11 pm I was up cleaning the kitchen. I’ll take it.

Thank you for sharing your terrible experiences, and warning us to be careful when considering taking these powerful drugs and the side effects they produce.I think you are so brave to continue to wean yourself off Sinemet, and I wish you all the best in coming off it all together. It's so sad to think that you were mis-diagnosed in the first place. Ladybird.

Muireann, my true sympathy with your mom and your family as you gather to help one another. These diseases and drugs affect entire families.

To answer your questions I never had bradykinesia or a blank stare until after taking sinemet several months. (symptoms u describe also could be associated with epilepsy petit mal seizures, narcolepsy, brain tumor, normal pressure hydrocephalus, Lyme, MS and many many more). The general rule of thumb "used" to be wait until all else is exhausted before the sinemet is introduced. Now I believe that docs that roll it out as a means of first resort are doing their patients a HUGE disservice. Since so many of these diseases respond to OTHER treatment and OTHER drugs why not try them first or some treatment that is less damaging and has less potential ever ever rediagnose.

As I am finding out there are lots of other drugs that treated my small adrenaline fueled tremor such as Inderal perfectly well. EVERYbody has some degree of natural tremor due to coffee, stress, etc. I went to hand therapy and had a number of steroid shots in my right hand years before ever going for Botox to help with the pain in my right wrist. I was tested for carpal tunnel etc etc etc and do have a small nerve sheath cyst in that hand that was never fully explored as a cause for pain. I started working left-handed and solved many problems.

I don't know about the slow motion being PD specific. If it was dystonia there are more than 50 diseases with dystonia as a primary symptom. There are also many diseases and disorders with bradykinesia, then there is primary and secondary bradykinesia (causes very different). IMHO I don't see that there was a reason to start your mom on sinemet right away when there are dozens of tests for bradykinesia involving things directly measured with EEG for example and distinguishable from PD. Good link _ tho i can't yet post links look under http dot brain.oxfordjournals dot org /content/124/11/2131 dot full -- see if that non-html text will lead u there.

I found that reference on a quick Google and it's full of causes for BK and ways to tell it apart from PD and other disorders. I never had bradykinesia UNTIL after I started sinemet. My only symptoms were slight adrenaline sourced tremor in right hand and diminished sense of smell. THAT's IT! Part of the diagnosis of this disease process has to some extent rely on response to medication. It sounds to me like your mom is caught in a game of catch 22. Too little or too much and she's very miserable to boot. I would march straight to another doctor or 5 or 6 until somebody explained to me why this could be nothing else other than PD.

Since there is NO WAY to tell without an autopsy I think I can safely say no doctor that is honest can ever say I'm sure it's PD. Certainly if NOTHING else has been tried I would not be willing to accept this as a diagnosis. Has she been tested for Lyme (not the antibodies since if she's not actively shedding or flaring the antibodies will be absent) but the Lyme itself? Has any other testing been done, is there any OTHER history of injury, meningitis, surgery, head trauma, hydrocephalus, viral infections, bacterial infections?

My brother has rheumatoid arthritis (and some other odd immune disorders), which is in remission now. His docs believe due to an immune response much like gout to a bug he picked up in Mexico. Last week we were comparing notes about my swollen and painful joints just since weaning from sinemet and wondered at the similar symptoms. The year before I was dx with PD I went to Mexico, contracted a bug (he Cozumel, I Cabo) and I was hospitalized and tested for months after my visit. I was dx with acid reflux and still take previcid for it. I now see many references to GERD/reflux being caused by bacteria/viral vectors and can't help but wonder at the similarity to our immune responses. The same year I was stricken with my first outbreak of recurring viral meningitis (which I've had 8 times now) not long after a spinal surgery.

I asked many times if all of this didn't seem awfully coincidental in timing but was dismissed by dozens of doctors. Now it seems common knowledge with this last out break I had that it is common knowledge that the Herpes Virus is a common cause for recurring viral meningitis and my problems all started after my body was invaded by an outside vector and my CFS space was opened to that contamination. What seemed obvious to me in 2001 is now obvious to a lot of other people too.

I think sinemet is a quick fix for this society that demands full bore function and blasts ahead without thinking to tell us. This drug could kill you on any day you can develop NMS and die because it will not be properly diagnosed at an ER. Even if you take in literature it freaks out the hospital and they don't want to touch you or it nor do doctors. I would try everything under the sun before I let a family member embark on the sinemet path. Don't stop what she's doing now without a doctor.

After you've been on sinemet for 5 years as I have it becomes devastating. It is the most horrific thing I've ever gone through to get off. More horrific than PD, cancer (which I also beat), or the spinal surgeries. I'd be asking some very tough questions before anybody in my family allowed that pill to pass their mouth.

Every symptom and manifestation that I had was 100% sinemet and I was burning through neurologists like trees. I always felt that something wasn't right about all of this. Had I not been so distracted by a very bad divorce I would have pulled my head out sooner perhaps and asked some harder questions. In retrospect EXTREME stress was my catalyst in an abusive marriage and being sick. My Mom has a friend similarly dx'd with MS who didn't have it or anything.

Based solely on your Mom's less than ideal response I sure would walk to another doctor-maybe specifically WITHOUT the predisposition of a prior diagnosis at first to explore ALL of the possibilities and treatments. I can't stress enough that exercise and PT are essential regardless. All of these things are use it or lose it propositions. Sinemet tends to immobilize so much that often shear weakness becomes a pathology all by itself and leads down the same road to preventable misdiagnosis or progression too fast.

I am so weak after withdrawal and hurting my hip with cramps 2 mos ago that I could not lie on my side and lift my right leg with knees bent. I was tough and active and sinemet whipped me in 2 mos to where I can still barely turn in bed. I worry each day-will my body make dopamine again? But it is-I'm getting dyskinesia on lower and lower doses. There is no other answer. My brain is kicking it up, imperfect still, but growing better.

The bradykinesia or OFF is also a result of long term sinemet (which has only 3-5 years maximum efficacy-docs don't tell u that usually) use reaching the end of it's optimum efficacy. So the answer is BK is not uniquely PD, it's also sinemet caused, and many many other causes. As you point out we are ALL DIFFERENT. Why are we being rubber-stamped??

I have much LESS slowness now with less sinemet. My doc (gp) said WOW you look BETTER today. It is vanishing very slowly as I rage. Do please consult a doc about reducing this drug-don't do it on your own. Research DAWS and NMS, print it (to take to the ER if needed) and talk to a doctor about it before an emergency. Be ready-be educated-be forceful in your treatment advocacy. A delay in proper treatment can kill 20-80% of those afflicted with DAWS. You are more likely to get it again on re-taper if you got it once.

I respectfully disagree that BK and blank stare are classic PD. There are hundreds of possibilities. At any rate you try other options, there has been no proof this or any delay causes a definitive change. Save it for when she truly needs it if this is PD. It is a short widow and PD does not shorten life. You question of dependence is a good one. ASK! We don’t know. I apparently am unique-but I don’t buy that. I bet I have many welcome friends.

This drug is a poison (ALL DRUGS HAVE SIDE EFFECTS), admittedly sometimes worth the pay off. We all should be asking harder questions before taking the plunge. If it unknown how it works do we trust something with no right answer unless we try other less harmful permanent things?

I hope very much this is something simpler for you. I urge you to ask and ask and ask again and BE CAREFUL with this wildfire. I wish you luck also. I am reminded of the words of Dylan Thomas

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Hi there,

are you saying you were diagnosed with pd from a slight tremor in one hand and a weak or no sense of smell?

thanks for sharing all of this...

YES! I am. All other "symptoms" that followed were 100% sinemet caused. Now u know why I've been seeking other opinions. Had I not been, and still going thru a divorce from a guy seeking to take advantage of me having PD for THREE years now I would have been more focused. As it was I saw many neuro's including out of state that never would re-eval the first diagnosis or read the genetic testing. I was told I had genetic specific marker...that was wrong had anyone bothered to read the records. Ex's seeking to draw divorce out in hopes i'll be incapacitated sooner.

Plus I diagnosed by an intern and not even given basic neuro exam by the doc.

Weak sense of smell I ALWAYS had since childhood; I told them that. Tho with less sinemet it's returning. AHH coffee! flowers! dog poo?? Thanks for it all. Remember they DON'T know HOW sinemet works. Big bad in my book to be using 3-5 year effective drug early and before exhausting all else.

D0gma,

Thank you for your thoughts on the topic. I think it's very important and refreshing to hear a personal perspective that challenges some of the ideas about Parkinson's and its treatment. I really appreciate your discussion!

Also, I discussed it a bit more with my Mom, and I didn't have my facts 100% correct, so I wanted to clear that up so I'm not providing misleading data points.

Here is a more accurate rendition of the initial onset of her symptoms:

1. She went through a difficult time when her mother passed and was put on Prozac and Xanax.

2. She stopped taking Xanax and developed a tremor in her hand. That was one of the first signs that eventually led to her "diagnosis" of PD. Unfortunately, she doesn't remember whether the bradykinesia had kicked in yet or not ... she thinks it had.

3. Another doctor put her on Madopar (levadopa + benserazide), so she was on this l-dopa medication for a while before starting the Sinemet. Her other PD-like symptoms (bradykinesia and blank stare, etc.) were there during the time she was on Madopar. She says that Madopar did not really relieve her of these symptoms (maybe they helped cause them??).

4. Finally, she was put on Sinemet (600mg/day), which relieved her of the bradykinesia and other symptoms, but definitely caused other problems like dyskinesia, etc.

So, in conclusion:
1. it does seem like the initial meds (e.g., Xanax) could have been involved in triggering some PD-like symptoms
2. it's possible that Sinemet, and Madopar before that, are as much to blame for relieving her PD-like symptoms while at the same time perpetuating them.

SSRI's like prozac and xanax ABSOLUTELY can kick off NMS or SS (serotonin syndrome) even when you don't quit them. These horrible syndromes can happen just taking the drug as directed. Going off the drug as I did with sinemet started this horrendously annoying to the point of cutting off my arm jackhammer tremor that I never before experienced (and is a very COMMON side effect of quitting the meds). And that list of meds keeps growing the more that I read. If she was then put on sinemet it is very possible she has the same issue I do and does not have PD at all from your description and time line.

Not to throw hope and let you in for a disappointment but I sure the heck would be asking some very hard questions to doctors and seeking new opinions because the alternative is very bleak. I asked my doc when he said I don't have PD what my prognosis was. He asked, "well what was your prognosis before?" I said very bleak. He said, "well it is no longer very bleak my friend." At the very least life without sinemet is better than life with it.

So whatever the cause of her symptoms I think you have a VERY GOOD case for her possibly not having PD but having gone through some type of NMS/SS problem and was inappropriately treated for misunderstood symptoms. She now could be addicted to the sinemet and if that is the case she must increase dose over time to maintain function. This means she will be more debilitated by the intrinsic increasing and numerous motor fluctuations that are a undeniable side effect of sinemet and will continue to assault her.

Read up on the symptoms of NMS or SS. They fit your mom. This is what's scaring me. How many more?? I so hope you find good news out of all of this. I don't mean to diagnose or raise false hope but this sounds very much like many of the case studies I've been reading.

I will pray for good news for you all. You are very welcome. If one person suffers less I consider my efforts worth while.

SSRI's like prozac and xanax ABSOLUTELY can kick off NMS or SS (serotonin syndrome) even when you don't quit them. These horrible syndromes can happen just taking the drug as directed. If she just stopped the Xanax or stopped too fast without tapering down this could be just simple detox symptoms because Xanax is habituating.

The same is true for Prozac if she tapered off too fast who knows what is too fast for one person or another since we are all unique. Going off the drug as I did with sinemet started this horrendously annoying to the point of cutting off my arm jackhammer tremor that I never before experienced (and is a very COMMON side effect of quitting the meds). And that list of meds keeps growing the more that I read. If she was then put on sinemet it is very possible she has the same issue I do and does not have PD at all from your description and time line. Mostly now the tremor is better and I don't need a 10 pound hand weight at night to sleep. But it does come and go and reminds me I still have some road in front of me to travel.

Not to throw hope and let you in for a disappointment but I sure the heck would be asking some very hard questions to doctors and seeking new opinions because the alternative is very bleak. I asked my doc when he said I don't have PD what my prognosis was. He asked, "well what was your prognosis before?" I said very bleak. He said, "well it is no longer very bleak my friend." At the very least life without sinemet is better than life with it.

So whatever the cause of her symptoms I think you have a VERY GOOD case for her possibly not having PD but having gone through some type of NMS/SS problem and was inappropriately treated for misunderstood symptoms. She now could be addicted to the sinemet and if that is the case she must increase dose over time to maintain function to battle. This means she will be more debilitated by the intrinsic increasing and numerous motor fluctuations that are a undeniable side effect of sinemet.

Read up on the symptoms of NMS or SS. They fit your mom. This is what's scaring me. How many more?? I so hope you find good news out of all of this. I don't mean to diagnose or raise false hope but this sounds very much like many of the case studies I've been reading.

I will pray for good news for you all. You are very welcome. If one person suffers less I consider my efforts worth while. Whatever you do please be careful-I can't find anybody that REALLY understands what NMS does to us or how to treat it. Apparently as I am finding permanent damage can be done if detox is not done appropriately. Still for me better than life with sinemet.