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