dear karl,
I have been trying to spiral upwards -and see if I can if at all possible put my
mind -body and spirit... into such a mode - I no longer talk myself into being - ill -but believing and thinking on wellnes?
I was dxd w/ PD age 32 -finally
I am 44 now - I am better now!


__________________________

http://www.nlm.nih.gov/hmd/emotions/self.html

Medically-trained Harvard psychologist and philosopher William James took an active and supportive interest in what he called "The Religion of Healthy-Mindedness" which, he reported in 1902, "has recently poured over America and seems to be gathering force every day." 28 James claimed that "mind-cure gives to some of us serenity, moral poise, and happiness, and prevents certain forms of disease as well as science does, or even better in a certain class of persons." 29 Even physicians who worried about the excesses of the mind cure movement were forced to admit that cures of functional disorders often followed mind cure practice and that "physicians have failed for many years to pay sufficient attention to what may be aptly called psychical disorders of the body, or psychical conditions engendering functional derangements, or functional disturbances produced by psychical states." 30 A great concern of many turn-of-century medical practitioners, however, was that people with serious illnesses might never get to see a properly trained physician because they were so intent on curing themselves via mental self-adjustment.

... They usually give you sinemet at a dose of three 25/100's per day taken every 8 hours. If you show a positive they may ramp it up to see how you react, so in my opinion they are not giving you enough sinemet (or concomittant agonist) to really tell if you are ripe for a PD DX. The pain around the eyes, now, could that be a neuro reponse (neurological pain, many names for it, but neurological pain means that it stems from problems of a specific set of nerves as they are wired to the pain center), or from grinding your face into your pillow at night (no,kiddding; do you only sleep on your back or do you sleep on your stomach?). The leg kicking sounds like nocturnal myoclonus, which is common with sleep apnea.
YOu are in a bad position. When the local docs gang up on you, it's time to get out of town. For some reason , most GP's and quite a few neuro's are just plain blind to PD, others see it in seconds. I was never depressed either, until my life fell apart, but that often comes in degrees. I just hate it when docs try to throw an antidepressant at you , it's a testimony to their ignorabce and laziness (not all docs, but too durn many of them imho).
YOu have do to a PD center of excellence, where you can be evaluated by a team of both seasoned and in training neuros. If they disagree, then they will know what to do next to either clinch or rule out your DX. Good luck.

They're only allowing me two 25/100's per day. I take one at 8 PM and another at 8 AM. I am asking for a third, because the symptoms start showing up about 4 or 5 PM. It's almost predictable. It's 6:30 PM right now and I'm already stiff and the eye pain is with me too.

I believe that I have read that eye muscle spasms and sweating around the eyes are a primary symptom of PD. The sinemet relieves the problem. To me, it's probably the worst. I don't sleep face-down. I wear a CPAP mask for my sleep apnea. I usually cover my eyes with a protective mask, because the air movement from the CPAP can dry out my eyes. My eye doctor helped me with that.

I have one other problem with my eyes that's also associated with my tinnitus: If I turn my eyes too far to either side, the tinnitus gets much more intense and a pain radiates from my eyes, sometimes all the way to my neck. Over time, I learned to keep my head and eyes pointing straight forward as much as possible. Sometimes, if I forget and turn my head and eyes rapidly to the side, I will get quite a jolt.

It's not really leg-kicking. There are two problems.

First, when I lay down to rest, I unconsciously will wind my legs together and sort of curl my feet together. There's often a sort of creepy-crawly feeling inside my legs, especially at the knees. This is probably RLS.

Second, when I am really calm and just about ready to fall asleep, suddenly it feels like I've been hit by a jolt of electricity and I shake for several seconds afterward. It varies. Sometimes it's just a leg or an arm, sometimes it's one side of my body, and sometimes it's my whole body. This is not the same as that jolt that most people do just as they're falling asleep--which does happen to me too. These bolts of lightening that hit me seem to excite my whole nervous system. Afterward, I'll lay there trying to quiet my nerves for anywhere from a few minutes to maybe a half hour. Once my nerves quiet down, I get another jolt and the process starts over again. I have seen many sunrises in the last few months because I've spent the night just as I've described. The only meds that help are narcotics such as clonazepam. Alprazolam and diazepam aren't as effective as clonazepam. I can honestly say that there have been many times recently that I have been almost desperate for sleep.

Yeah, I've had that thought. Sometimes it feels like the local doctors are weighing their professional relationships against the needs of their patients. One would hope that patients would come first. But then, with so many lawsuits, the doctors almost have to close their ranks just to protect them selves.

Fortunately (sort of), I'm a disabled veteran and have the Veteran's Hospital as an alternative. The VA did the colon cancer screening that came up positive. My local doctor seemed to act like it was just me complaining again and has left that whole issue up to the VA. To this point, I haven't brought my neural issues to the VA, but I think it's time I did. The VA, at least, seems to take my health seriously.

That points to one of my issues with antidepressants. It sometimes feels like they just want to get you feeling better and out of their office. I suspect that some conditions may just get better on their own and some antidepressants may just help someone get through the rough times. It may work just often enough to encourage the practice. I, however, like to go through life with my eyes wide open, even if I don't like what I see.

I read once that in order for antidepressants to work, a person must first be depressed. The article pointed out that the main reason antidepressants don't work is misdiagnosis. My doctors here seem to believe that treating my depression will make my symptoms go away. For me, that's just too hard to believe. I may try the cymbalta they want me to take because, ah what the hell.

Antidepressants are not used only for depression. I take a tricyclic AD for joint and muscle pain, itching, and for help with sleeping. I did not take it for depression, because I wasn't depressed. So an antidepressant may help you sleep better and reduce your pain.

~Zucchini

Keep a good eye on the way you are perceiving your condition, but if at the end of the day you feel that sinemet is helping you, then it sounds possible that you do have a condition within the pd spectrum.

I have spent the last several years with doubting doctors, who won't see what I know to be there, and what people who know how I function can actually see - that this drug helps me in ways that nothing else has done. I currently have a reluctant diagnosis of 'possible parkinson's disease' but my consultant now discusses my 'parkinsons' with me! He has stuck his neck out even though other doctors have not been able to make up their minds about me, thus attesting to how difficult this disease is sometimes to diagnose.

I also had a pet scan which came back negative, but the same consultant said it was not 100% accurate, and about 5 or 6% of people WITH pd would have a negative scan. Nobody knows why.

Again it highlights some of the very real diagnostic issues - doctors are often reluctant to put someone on medication for the rest of their life without ruling out every other possibility.

There is also the issue of once you ARE on sinemet, so many symptoms go away, if you are on the underlying problems become much less visible, and so you get a very cautious response from your medics.

Good luck with your quest for a dx. I believe that what we all want is the right label and medication that helps our condition, it sounds as though sinemet is doing it for you, as it did for me.

Best wishes
Lindy

(If no-one has said this yet, if you do not have a dx now then it might be worth taking out the right kind of health insurance as it will be too late if and when you receive a formal dx of pd, here in the UK I would not need to have it, so perhaps someone else stateside could advise on this, could someone else pick upon this?)

...your thoughtful and reasoned approach is really giving us a chance to think, which is good for our brains, of course. Everything above is IMHO true and helpful.

Even so, don't take my experiences, or anyone's, as medical recommendations. I know you're too smart to do that, but i say it for the unnumbered readers seeing this.

Your jerking while falling asleep is something that I have experienced in two sets of circumstances: (1) while coming off a narcotic pain management drug during a long recovery from surgery; and (2) when taking any generic form of Sinemet or any form of Sinemet CR (sustained or controlled release)--I just don't tolerate one of the fillers or dyes or something and have to have the brand name drug. For what it's worth.

Jaye

...i think that together, all of us ARE getting somewhere, although I don't exactly know where. ike jaye said we're not docs, we just have together the myriad of symptoms that make up the spectrum of PD. And Lindy is so right about the insurance bit. I missed out on long term care from a professional society because i was jerked around and it was too late by the time i asked for it. Also consider long term care; you'll need it, I'll bet.
Back to the eyes. As a PWP, my personal experience is that I sweat buckets from the whole head, as well as the forehead, but only when my body temperature gooes beyond where I can't naturally shed the heat. WE seem to have a problem with many autonomic, homeostatic control features of our bodies.
And benzodiazepines aren't narcotics, they are a class of chemicals acting at their own specific receptor systems. Clonopin just differs enough in structure that it extends it's range of effects into the antiepileptic, antiseizure area of chemical control. Narcotics act on a specific set of receptors called opiod receptors, which i have no doubt would "Cure" many aspects of your troubles, but you risk addiction, but that can be controlled too, if it's worth it enough to you.
The leg thing, i'll bet IS myoclonus, a kind of "myoclonus plus", which bothers me because it should not be to the degree that you describe it in PD. That "restless leg syndrome" of curling up your legs is a typical "dystonic" response of undermedication, strngely enough also described as "dyskinesia" in overmedication at peak blood levels of dopa.
Do take our advice and go through the "team" approach to PD DX at a center of excellence. This avoids the "one doctors opinon" pitfall. cs

Jaye,

The jerking and tremors while falling asleep was occurring while I wasn't taking any medications at all. It started several years ago, before I started seeing a doctor. At first, it didn't bother me very much--at least not overtly. I could fall asleep. My wife would tell me that I spasmed all night long, but I didn't remember any of it. Sleep studies, though, determined that I was only getting about 4 percent of the deep sleep I needed.

ol'cs,

Everyone seems baffled by the problems I'm having with my eyes. I can tolerate the leg problem, except when I get that creepy-achey feeling in my knees.

Everyone,

I'm starting to feel a bit overwhelmed. I've learned a lot, and I do very much appreciate the caring and thoughtful replies. I have to leave now to go talk with the HRS folks at the university where I work about returning to work. That should be interesting.

Thank you very much to all of you. I wish you the very best.

Karl, your whole experience is so much like my own that I was astounded when I read your posts. That included my taking family medical leave from my tenured academic position for four months in 2000 to recover from serious clinical depression prior to being diagnosed in 2001 with Parkinson's.
One of the things I encourage you to do, since you are apparently in the early stages, is to research all of the possible neuroprotective strategies that many of us have tried and are continuing to use to preserve what is left of our basal ganglia. Look up high doses of Coenzyme Q10, low-dose naltrexone or dextromethorphan, and of course, reverett123s ginseng, along with a variety of other available antioxidant nutritional supplements. Check out posts by Ashleyk and myself for details on low-dose naltrexone LDN and dextromethorphan DM, which is available over-the-counter in several cough syrups.
Robert

My wife had similar symptoms to you when she started her treatment and had the same difficulties getting it diagnosed (over two years and many specialists). We really didn't believe it either until the Parkinson's drugs actually relieved her symptoms.

We first started with Mirapex but that made her sleepy and depressed and a shoe shopper so we switched to a low dose of Sinemet (Ldopa/Rdopa) (3 100mgs/day) in combination with Azilect/rasagiline and she had exactly the same experience as you with the leg and it was keeping her up.

Anyway so anyway, after much experimentation - I'll tell you what worked *for us*. This is not a recommendation because there is so much variation in how PD patients respond to medication but these are things that you can discuss with your neurologist. I do recommend that regardless *you* make the final decision about your meds - remember that your neurologist only has so much time and cannot monitor your doses and timings as closely as you can.

So what worked for us was basically taking a low dose of Requip/ropinerole (.5 mg tid) with the Sinemet/rasagiline. This completely got rid of the restless leg and allowed my wife to sleep. The dose was low enough not to trigger the other side effects (sleepiness, compulsive behaviors) and actually seem to help with the edema she had with Sinemet alone.

The rasagiline should help with the end of day stuff that you're experiencing (as might switching to a controlled release form of Sinemet) but a major additional effect for my wife is that it combats the depression. She feels brighter and more alert but not medicated. We had tried Zoloft earlier when we were on Mirapex and she hated it. There is some evidence that rasagiline may delay Parkinson's progression too. Anyway, it is extremely well tolerated by my wife though we had to titrate the dosage to .5 mg - at higher dosages it was causing vivid dreams (and sleepwalking with the restless leg keeping her up). You do have to watch the drugs you take with rasagiline though since it has the potential to interact with several families of other drugs.

The other medication that we've found helps with the depression is Modafinil (Alertec/Provigil). The major use of this drug is combating sleepiness. It's much milder than amphetamines and doesn't have the side effects of caffeine. We started it to combat the occasional sleepiness she gets with Requip (though hopefully, the delay release form Requip-XL available soon will help too) and but it also combats the depression. I want to emphasize that what she feels is the return of motivation, wanting to do things, brighter but not in a giddy artificial way or in a foggy-stupor type of way. Fairly mild effects but significant for her. Your mileage will almost certainly vary.

Again, this is only what worked for us. You need to talk to some specialists about this (not a nurse or GP) and even then you really need to educate yourself about the meds because the specialist will be dealing with many patients and will tend to treat the average patient. In our case, our neurologist is a busy renowned doctor who does good Parkinson's research but he is a poor listener and his initial suggestion was to eliminate the rasagiline, increase the Sinemet and maybe add an agonist. If I wasn't a biochemist researcher myself, and insisted on customizing the meds to fit my wife's needs, that's probably what would have happened too. So regardless of what anyone says in the end you do need to trust your body and what it tells you, especially for PD sufferers since everyone seems to be so different.

Unfortunately, I believe all of the meds, rasagiline, modafinil and ropinirole are still on patent and are not cheap (esp rasagiline which is very new and not on some drug plans). I think modafinil and ropinirole are coming off patent soon which should mean dramatic price drops.

I wish you the best of luck.