Need Advice and Insight - Response to Medication
 

I'm going through the diagnosis process for potential idiopathic Parkinson's disease (and it's been a very long road indeed, very similar to many of the stories I've seen described in this forum). As part of the process, I'm taking one and a half Sinemet 25/100 tablets twice a day, and a half tablet at the end of the day. I'm also taking 4 25-mg Lodosyn (carbidopa) tablets at the beginning of the day, to help with severe nausea. I had to ramp up to this level over a couple of weeks to help minimize side-effects, which apparently I'm susceptible to. The MDS I'm working with tells me he wants to judge my response to the medication as a part of the diagnosis.

My main symptoms are strongly asymmetric bradykinesia and stiffness (left side only at this point), with a small amount of resting tremor in my left hand. The doc tells my I exhibit cogwheel rigidity on the left side, but not on the right. I can't type with my left hand, and have trouble with buttons and tying my tie. When I make a conscious effort to try to move my left hand rapidly (clenching and unclenching, for example), it results in an odd quivering, jerking, uncontrolled movement. I also have developed a limp on the left side, and occasionally find myself dragging my left leg when I walk. Based on what I have read and what I've been told, these are classical PD symptoms, and should respond well to levodopa therapy. I also believe I'm experiencing some non-motor symptoms, but it could be that I'm just freaked out and not thinking straight.

Here's the problem - none on the symptoms seem to be improved from the Sinemet I've been taking for the last several weeks, although the side effects (mainly nausea and dizziness) are bad enough that I'm almost unable to work. I'm still experiencing all the symptoms I described earlier, with no noticeable improvements. I've searched this forum pretty extensively to find a discussion on this subject - my apologies to you all if this is well-discussed and I just don't know it.

I've been chasing this for at least three years, thinking it's first one thing and then the next. The diagnosis process has looked at things like rotator cuff tears (MRI says no), carpal tunnel syndrome or cubital tunnel syndrome (nerve conduction study and EMG said probably not, but orthopedist wanted to do surgery anyway), normal sports injuries (I'm 47, and sometimes have the tendency to try to relive past athletic glory), simple advancing age and normal decline (my health up to this point has typically been good), and things like diabetes or other metabolic disorders. Lab tests have recently ruled out Wilson's disease, and I just had a cerebral SPECT scan that I don't have the results for yet.

Can anyone give me insight into the following concerns and questions?

1. How long should it take Sinemet to have an effect on symptoms? I've read that it's an almost immediate effect if it's going to work, and doesn't require a "build-up" period of days to weeks. Is this true? What's your experience with Sinemet? How fast and how well does it work (discounting longer-term effects like diskinesias, which are not yet an issue for me)?

2. How much improvement should I really be expecting? Return to full function or only subtle improvements?

3. What could this be if I have classical PD symptoms that don't respond to levodopa therapy? I've read about "Parkinson's plus" syndromes and things like corticobasal degeneration (the doc mentioned this last as an unlikely possibility), but I don't show any signs of autonomic system dysfunction (blood pressure problems, incontinence, sexual dysfunction, etc).

4. Is there reason to have hope that this is just one of those odd misdiagnoses, and that PD or parkinsonism isn't the culprit here?

5. How much value have any of you seen in using SPECT scans to clarify your diagnosis? The literature I've read seems to be somewhat inconclusive.

I realize this is a long post, but as I mentioned before, I'm frankly a bit freaked out and am reaching out to this community for some clarity. I'm grateful for any insights you can provide.

Hi,

I am sorry you are going through this. It's scary enough to face having Parkinson's in the first place let alone not being sure what the heck's going on. Often, a MDS will issue a "dopamine challenge" to see if a patient responds to dopamine. Also, and MRI is given to rule out any other brain abnormality. There is no definitive biochemical test for Parkinson's, so we're really dependent upon the skill, experience, instinct, whatever of the neurologist.

In taking levodopa, I think you are right that you should have a more immediate response with any sort of dopamine deficiency. However, we don't all respond to medication the same way; some do not respond well to levodopa though they seem to have Parkinson's. Likewise, people have been diagnosed, responded to meds, and upon autopsy (this is the only definitive diagnosis for idiopathic PD, gruesome, I know) did not have Lewy bodies, the hallmark of the disease.

I think the SPECT scan should help tip the scales in your diagnosis. If there is indeed a dopamine deficiency, it will show on the scan. From there, I would seek a second opinion no matter what the scan shows just to be sure given your reaction to the levodopa trial. Diagnosis of early PD, from what I've read, is difficult as the symptoms mimic those of other things.

If it is PD, try to limit the stress (easier said than done, I know) as it ramps up your symptoms, which in turn makes you more stressed, till we come to a full vicious circle.

Hang in there!

Laura

Hi,
sorry to hear of the problems you are going through, have only a couple of things to add to what Laura has told you. the first is that not all parkinsonism is going to be parkinson's plus so please at this stage do not stress about that, there are a whole lot of other related conditions and they do not all spell the worst.

the other thing that you might consider if you are doing a sinemet challenge and getting no response from the medication is that the levodopa is not actually getting to the brain because of poor absorbtion - it is a possibility, especially as you are having some problems with nausea, and could also be caused by protein intake, you could try restricting protein till late in the day to see whether there is any effect from the medication.

hope that your issues resolve, it does sound like pd, but it is notoriously hard to diagnosed as some of us here have found! best wishes in finding a treament that suits you and a diagnosis too.

lindy

Another thing that might give you a clue is what happens the first couple of hours of the morning as you go from no meds to "should be working by now". Keep a log (might be easier to dictate to a recorder) and record everything - what you take, what you eat, what works and what doesn't, times for everything, etc.

How is your walking ability through the day?

Thanks for the info and advice - I had read about the absorption problems caused by dietary protein, so I've tried restricting protein to only the evening, doing away with it almost completely for a couple of days, and eating very little of anything during the course af a day to see if I experienced any differences. There's either no difference or it's so subtle that I'm missing it.

My walking doesn't seem to vary that much over the course of a day - I find that I'm a little clumsier in the morning, but not significantly.

I've been expecting a significant change in the symptoms in response to the medication, and what I'm reading into your comments is that it may not be as clear-cut as that. I know that diagnosing this illness is difficult - perhaps I'm just looking for a level of certainty that's not available.

PD is tough to dx ...
 

I was told "we think you have a 60% chance of PD, come back in 6 months" !! In 6 months it was still inconclusive however the Pet scan proved conclusive. Remember by the time you show symptoms 80% of your neurons should be affected so a scan should be a pretty accurate guide. In the UK a scan is accepted as a dx by insurance companies where clinical dx might not be.

I never did the ldopa challenge so cannot provide anything there.

Good luck, this is the worst time,
Neil.

welcome to the forum and our very exclusive club
 

Hi there,

It's great to see someone who writes longer posts than I do...welcome. ;)

The diagnostic process truly is the worst part; for me, the advent of a diagnosis that made sense was a huge relief. At least initially, until the grief took hold. Hang in there.

Although not on levodopa myself, it is my understanding that feeling a dramatic and immediate improvement further confirms a PD hypothesis. So, given your clinical description, I am surprised right along with you. Perhaps you're simply the exception that proves the rule. (Don't you feel special?) One thing that comes to mind is the severe nausea you mention. Is it so severe that you're vomiting up the meds? That would explain their lack of efficacy.

The SPECT scan should offer important insight, and possibly a certain peace of mind. With clearly asymmetrical symptoms, the dopamine uptake distribution (assuming PD dx is correct) should similarly be asymmetrical. Mine was. Your MDS should also be able to tell you how your dopamine producing cell depletion (percentage) compares with others. (You might have to press for this, especially if the number is daunting.) My understanding is that the asymmetricality of my images "ruled out" MSA and other scarier stuff than PD. So ask your doc about this when reviewing the results.

If it walks like PD and talks like PD--and if all the other things that have crossover symptoms with PD have been ruled out--then it probably is PD. Or, not being a doctor but simply a patient, it may be most helpful to think of it as such until another hypothesis emerges as more likely. I can tell you that I drove myself (and my darling) completely bonkers last winter re: the PD versus P+ question. Please keep in mind that, as uncommon as YOPD is, P+ syndromes are even more so...and hence, very unlikely.

Like you I had some cognitive symptoms that worried me. (I suspected Lewy Body Dementia.) Yet I was reassured by not one but three MDSs that (1) the stress/anxiety of not knowing what was going on and lack of restful sleep were likely the culprits and (2) cognitive changes are not uncommon with PD and do not necessarily indicate P+. But I see where you are going with this, having been there. All I can say is to breathe through this awful waiting period. Now would be a great time to start yoga. The SPECT scan results really should help.

Regarding the autonomic system dysfunction, I do have some of that. While early AS dysfunction can point to P+, I am assured that it also can be part of garden variety PD.

Regarding hope, there's always reason. Hope that whatever it is you WILL have the strength and support and optimism (on good days at least) to deal with it. Better yet, know that you will, and hope that you will have enough leftover to take care of those you love. I know your question was more medical, but you get what you get on this forum sometimes! This is something I wish someone had said to me..

Finally, if you haven't visited parkinsons-support-chat.org please do. Run by John and Penny Teem--both of whom have PD--this chat is especially geared toward newbies. It has been an invaluable part of my journey from something approaching hysteria last winter to something approaching peace this summer. Go any evening between 8-12 EST. (If you want to know how I feel about Penny and the service she and her husband provide to PWP, read the poem I wrote for her, which is posted on my fledgling blog at their site.)

Please let us know how you are in the coming weeks. You are not alone.

Rose

Hi, TxN -
I feel for what a rough time you are going through - I remember it too well. One thought that may not have been mentioned - are you on generic Sinemet, by any chance? The generic has no effect on me at all whereas the brand name stuff does. Wish I had more to offer, but that is all that comes to mind at the moment and let us know what happens.

Dorothy

I'm very grateful to you all for your kindness and great advice. As a matter of fact, Dorothy, I am taking generic Sinemet. Perhaps that's something to consider.

The MDS I'm with now is actually the doctor I went to for a second opinion - the original general neurologist diagnosed PD almost immediately based on my medical history, a clear brain MRI, and my neurological exam. He prescribed Azilect, which I took for three weeks with no apparent effect. He then switched me to Stalevo 100, which I took 4 times a day for 4 weeks, again with no apparent effect other than a wild ride with nausea and vomiting. He then switched me to Sinemet SR, which didn't make much difference either in symptom control or side-effects (still sick as an ugly dog). His opinion was (I'm paraphrasing), "Yeah, that's weird. Probably means MSA." I sought a second opinion.

The MDS I'm seeing now ordered blood tests to rule out Wilson's, verified the brain MRI was clear of "space-occupying defects", ordered a SPECT scan, and repeated the medical history and neuro exam (although his neuro exam seemed a bit more comprehensive). His conclusion at this point is probable idiopathic PD, but wants to review the SPECT scan. He said there's an outside chance it could be something like corticobasal degeneration, but warned me not to get carried away with that thought. His view was that the original drug challenge was so haphazard as to be useless in supporting a diagnosis. He believes the original challenge didn't raise my dopamine levels high enough to be conclusive, and that the nausea/vomiting were only complicating things. He prescribed regular carbidopa/levodopa on a slowly graduated schedule, with extra carbidopa in the mornings to control the nausea. He also prescribed an antinausea pill if things got too bad, but it made me so sleepy I couldn't get through the day without ending up under my desk.

I think my next steps are to see what the SPECT scan says and to perhaps try the non-generic Sinemet. I've been operating under the belief that my lack of response to dopamine means P+; I'm relieved to hear that it may not be so cut-and-dried, but the engineer in me wants answers. But like my buddy Mick says, "you can't always get what you want." :-)

Thanks again for your help - please don't stop if there's more to offer. I'll let you know what I learn.

Dear Txn,
My, you have been through a lot - even more than many of us - and most have our own nightmarish stories of the journey to definitive (ha!) diagnosis.

Please mention the idea of name-brand vs. generic - most docs will say they are both the same, but I used to work as a psychiatric social worker, and, believe me, some drugs really are different as generics - for some patients. So it is not the placebo effect - though that is getting more coverage these days! - these folks had no idea which they were getting. Sinemet is the only generic I have had trouble with personally.

Sounds like you aren't going to stop until you get answers - good for you! Hang in there.

Dorothy

Generic sinemet is useless for us
 

We cannot take the generic sinemet and can only use brand name. Virtually ALL insurance companies require generic be used unless the doc specifically writes in name brand, and is prepared the justify the additional cost. We learned this the hard way.

If you google name brand v. generic, you will find, as we did, that the changes between the two can be huge, from time of release, to how long the drug lasts, to what fillers are put in there (which also affect absorption), and on and on.

Finally, don't expect that great sinemet "honeymoon" everyone talks about. We never did get it, and when we didn't, began to assume the worst. The doc said a lot of folks don't get the honeymoon, and that, like for us, the sinemet simply does not do that great a job with symptomatic relief. Like they say, everyone is so very different. He later also told us that the sinemet helps mainly with rigidity and muscle pain, but does little to help tremor....while the mirapex helps with tremor but does little to help with rigidity/pain. Wish we'd known this at the start of our PD journey, it would have kept us from wondering so many things!

txnewbie - I have had a very similar experience to you both with symptoms, meds and results. I started with requip which resulted in hallucinations, then Azilect which did seem to cut the edge on my anxiety a bit, and next I took Stalevo for 6 months. Although, people who have had PD longer than I where experiencing "very noticeable" relief at the same doseage, I didn't notice any thing other than waking up at 3am for no reason everynight wide awake and some nausea. So, I did the rational thing, freeked out and stopped taking all my meds(I told my doctor and titrated down appropriatly:) )

I'm now 4 years into my diagnosis, not on any meds, still working and struggling through the day. The toes on my left foot have recently joined the symptom list, I can hardly make them wiggle any more.

Thanks for your post, it hit very close to home for me. The people in the forum are great resource for both knowledge and support. Good luck in your quest, I'm interested in what you discover.

Take care,
Robert

Just an update (of sorts) - still no additional insight into what's going on. The results of my SPECT scan have been available for almost two weeks, but my MDS won't tell me what they are over the phone, and won't even give me 10 minutes on his calendar to come in and talk to him. I've got an appointment scheduled in about two weeks, but it seems ridiculous to be forced to wait that long for some potentially helpful information. I requested a hardcopy of all my medical records, and even that is going to take them a week to complete.

I've offered to come in and sit in his waiting room until he has a minute, or come in before his calendar starts in the morning, or buy him dinner, or do whatever he needs to breaks a few minutes free. He's not willing to budge.

I'm very frustrated with this situation - it's never happened before with any other type of doctor I've been to see. Is this a common practice in the PD world?

nph can mimic pd
 

Normal Pressure Hydrocephalus Overview

The brain and spinal cord are surrounded by a clear fluid called cerebrospinal fluid (CSF). This fluid is produced and stored in cavities in the brain called ventricles. It circulates around the brain, moving from ventricle to ventricle. The purposes of the fluid are to cushion and protect the brain and spinal cord, to supply them with nutrients, and to remove some of their waste products. Any excess fluid drains away from the brain and is absorbed by other tissues.

i use teva generics, work fine.

I certainly hope this is not a norm in the PD world. I have an excellent neurologist who treats me like an equal and is always available by email and in person too within a day of requesting appointment. I am sure you will hear from others too about their neurologists.
Looks like your neuro is very busy and doesnt want to make any extra effort to see his/her patients. Only positive thing I can think of is that your scan probably did not show anything that is threatening, hence no rush to see the doctor. I am not justifying your doc's behavior but just thinking aloud.

If you are not happy with your neurologist, its time to change. Hopefully you will find a doctor who cares a little more than the doc you go to now. Good luck!

girija

treatment
 

our experience is much like girija's. Husband's present neurologist is very responsive to emails or phone calls. A neurologist whom we first consulted at one of the Midwest Meccas of medicine became incensed whenever I opined that Lipitor was somehow implicated in the onset of my husband's Parkinson's, and whenever we called the following week with a question about the AMantadine he started my husband on, the neurologist never returned our calls. Never....
In addition, with the current neurologist, whenever my husband was 10 min late for his appointment, the staff told him he could not be seen and would have to reschedule. Fortunately the physician walked out into the waiting room, shook our hands and escorted us back into the exam room, without consulting the front office staff about my husband's errant behavior.

general comment
 

I've been trying to figure out this disease since i was dx in 98.Some days the stalevo mirapex combo works ,and i can jog around the block other days it seems worthless.I'm clueless after all these years,and multiple trials of diet change ,dosage change,change on time I take the meds etc,etc.makes no real difference.one thing does make a difference .If i miss a dose of meds. I become a basket case.I have become dependent on 4 doses a day of stalevo,and mirapex.now almost 12 yrs after starting pd meds I find I nap more,procrastinate more,have half the energy,but I also went from 53 to 65.To sum up give the meds a fair chance .Honeymoon never had one.Wish you all the best:):)

I couldn't have said it any better Scotch1. That is exactly how it's been for me the last four year, minus the jogging (you really wouldn't want to see that :)

Scotch1;

It sounds to me as though you and Teana have some diet issues. Any protein should be taken at night. ANY protein can mess you up. Even cream in your coffee can have a bad effect on your meds. READ YOUR LABELS!! protein is everywhere!!

Charlie

dear txn,
 

it is my understanding that different pwp respond to levadopa at various levels. in other words, you may need to take alot more l-dopa in order to get a response. not good news considering your nausea. my initial dose to get a response was three 25/100s which quickly went up to four per day. i have read thar up to eight 25/100s a day is not any concern even for a trial. the docs are good at dealing with nausea, if you can get them to listen and believe you. so hang in there, relief could stillll be a pill or two away.
archie

All-

Just a brief update. I got the results of the lab tests and SPECT scan (unremarkable), and have ramped up significantly on the Sinemet dosage to the point of taking about 8 25/100 tablets a day, with extra carbidopa in the mornings. Bottom line is that I'm seeing some symptom improvement from the Sinemet, and am finding ways to manage the side-effects, which are mostly still nausea, dizziness, insomnia, daytime sleepiness, and "fogginess". So now I'm starting to move from disbelief and skepticism to acceptance and management.

I was initially a bit confused about the meaning of the "unremarkable" SPECT scan. Apparently, there are two kinds of SPECT scans that have some relevance to Parkinson's, and only one of them is used for diagnosis in the US. The one I had done measures blood perfusion in the brain, and was done to rule out physical defects that could have been causing my highly asymmetric symptoms. The other, which is used for diagnosis in the UK and elsewhere but only for research in the US, measures dopamine activity in the brain. "Unremarkable" in this context just means that there are no blood flow weirdnesses going on.

I wanted to again thank all of you who responded for your help. I have more answers now, and am starting down the path of figuring out what this new life is going to be -

I also had a frank discussion with my neurologist about his lack of response to phone calls. There were some extenuating circumstances, but one thing he mentioned is that he has a "take-it-or-leave-it" policy of not discussing test results over the phone. Doesn't really excuse his lack of flexibility in scheduling a short appointment to have a face-to-face meeting, but to his credit he didn't make excuses or try to hide from responsibility.

Diagnosis Marathon
 

I think more of us than not have had a rocky road to diagnosis. It took me three neuros and a hand surgeon to get one. As far as sinemet, eventhough they insist upon calling it the "gold standard" it really doesn't work well for me either.

I have been diagnosed 9 years, was the poster child for Permax until they withdrew it. Went on sinemet because I didn't tolerate requip of mirapex. I developed dystonia in the backs of my legs and feet that the sinemet didn't touch. Went on Neupro until the withdrew it (a repeating theme.) Then went back to Requip very slowly and it has helped. I'm nearing a top dose of it now and additional sinemet doesn't make up for the waning effects of the requip. Even taking twice as much does not make any difference. So there are some of us that don't really respond well to ldopa and still have PD (probably.) Ah denial, don't ya love it.

Don't really have any advice except maybe try an agonist. Worked for me.
Good luck.