New location, new neuro

[kaypeeoh]

I posted under new location, new doctor. But I can't send a photo to an existing file so had to start a new thread. I'm sending a photo of my discharge instructions. This doctor concurs with the other neuro; I have PD. But maybe also MS. So I'm back on Sinemet. She saw weakness and mild rigidity in my left side, arm and leg. Even my wife noticed. I asked about the DAT. She said they do it but result wouldn't affect trying Sinemet first. Eventually I'll have another MRI. In three weeks I go back for a checkup. She said don't drive alone. And get rid of my motor scooter. My wife says we can give it to our daughter.

She asked questions for two hours. Often asking the same question for the second or third time. They drew blood for everything, she knew I'm a Veterinarian, testing for tremonema even. I think that's a parasite. Also Lyme. Also clotting problems. Don't run on roads, use the treadmill.

Her biggest fear was my falling. She was apologetic about the diagnosis. She understood my work was the only thing important to me. I never took vacations, I worked 6 days a week and often saw emergencies on Sunday.

[kaypeeoh]

She mentioned they are studying B1 treatment for PD.

[Sapeye2020]

Did you ask about Melatonin?

If not look for the 3 threads from Chartist on this site... lots of studies and results.

[kaypeeoh in reply to Sapeye2020]

She asked about melatonin three times: When I took it and my dose.

[Sapeye2020 in reply to kaypeeoh]

have you been on it long enough to notice any subtle changes?

I have noticed the on /off cramps in my legs is fading...and my hips are less 'angry' at night so I can lay on either side and not awaken by discomfort...

[kaypeeoh in reply to Sapeye2020]

I tried Sinemet two years ago. I never felt any effects. But my office staff sad they noticed positive behavior such as better mood.

[Sonshineman1 in reply to Sapeye2020]

How much melatonin do you take and how often do you take it would be very interesting to know thank you

[kaypeeoh in reply to Sonshineman1]

10mg melatonin one hour before bedtime.

[Sonshineman1 in reply to kaypeeoh]

Thanks

[Sonshineman1 in reply to Sapeye2020]

I would like to know how much melatonin you take and how often do you take it thank you very much

[park_bear]

At that dosage interval Sinemet CR or the equivalent carbidopa/levodopa ER is the better choice than Sinemet IR, which is what you have been prescribed. For more detail see this comment of mine, and the ensuing discussion with Hikoi:

healthunlocked.com/parkinso...

[johntPM in reply to park_bear]

Sorry to disagree park_bear, but my preference would be to follow the doctor's advice and stick with the immediate release (IR, e.g. Sinemet). In the early stages of PD, patients maintain some endogenous dopamine production and storage, so the assumption is that the peaks and troughs of the IR will be smoothed over naturally. Also, it is easier to titrate the dose using IR than extended release (ER, e.g. Rytary), which has a more complicated pharmacokinetics. If IR doesn't work, then ER would be a reasonable thing to try.

[park_bear in reply to johntPM]

I did not intend to suggest not following the doctor's advice. Any change of this nature must be discussed with the doctor, who is, after all, the prescriber.

I do agree that endogenous production of dopamine does help to smooth out the variations - to a degree. My experience with the IR version was fluctuations were too great - at first dyskinesia, then insufficient levels.

If dosage is at two hour intervals the IR version is easier to titrate, since with longer acting versions the dosages overlap. See the charts at figure 1 at this link:

ncbi.nlm.nih.gov/pmc/articl...

However, the idea of dosing the IR version at eight hour intervals will not yield a satisfactory result, since after four hours the levodopa level is less than one quarter of the peak, and goes down from there. On the other hand the ER version maintains a roughly constant level for six hours.

[Sapeye2020 in reply to park_bear]

I am on CR C/L as the dose of peak of IR took me into splitting headaches. It took the Neuro a couple of visits to come up with a repeat every 4 1/2 hr (waking) and 3 to 5 hrs after going to sleep then repeat next day.. 8 AM, 12:30 , 5PM, 9:30 PM plus sleep cycle dose... I take 75/300 each dose

[LAJ12345]

Sounds like you have found a good neuro! Very thorough

[Zella23]

Seems similar to what my husband was given after initial diagnosis. Definitely wasn’t given all the blood work or referred to a physio.

Sounds like a good Neurologist to me.

[Hidden]

Seems very thorough

[kaypeeoh]

"...she knew I'm a Veterinarian, testing for tremonema even..." It sounded familiar so I thought is was some sort of human parasite; In college I took a class in human parasitology. But I checked with Dr Google. It's the bacteria that causes syphylis. Now I understand why she was so apologetic about that test. This is Day 2, just took third half tablet. Like before it made me very tired all day. And woke with a headache. Tremor unchanged.

kpo

[Marcia123 in reply to kaypeeoh]

I also wondered about syphilis And dental pathogens. I have a tremor and weakness in my right side. When testing for Lyme the bands that are the strongest are 41 and 39. 41 is also the band for dental pathogens such as treponema denticola. All of my issues started after I had a tooth extraction and my right arm swelled and turned blue. Nine months later I developed a slight tremor; since then there has been progressive weakness on my right side and the tremor is going to my leg and my left side too.

[kaypeeoh]

"...dental pathogens such as treponema denticola… I didn't know there was more than one form of treponema. If I have it hopefully it responds the antibiotic. But I've always been a hypochondriac about my teeth; I floss, then brush then gargle then floss again, three times a day.

kpo