Have been to my Chinese doctor today. She is horrified that the Sinimet has not stopped the resting tremor. I didn't know it was supposed to.
When I said that it was not severe enough to worry me she was still horrified
Have felt much better since being on the Sinimet and thought that was enough
Have not seen my specialist since the original diagnosis 8 months ago and around a six week wait to see the doctor
Can anyone comment on this.
If you are in UK you should see your Neurologist every six months or so for your PD.
It's important that neurologists take the time to check the patient of PD every few weeks, after initial diagnosis, in order to adjust correct dosage of Sinemet, and, perhaps, other medications. When I was diagnosed with PD, the diagnosis was not given until it was proven that Sinemet had pretty much stopped my resting tremor. I, also, have some essential tremor, but it takes a specialist to sort that out, I believe. So, I believe it's important that you see the specialist A.S.A.P.
Sinemet should stop your resting tremor. Your doctor is the best one to advise you. If it is not the Sinemet CR version (controlled release), then try to take your tablet about one hour before meals, and see if that makes a difference. With the Sinemet CR, timing is not so crucial, except for the first one of the day, which seems slow to take off. If you are not on a full tablet yet, try increasing the dosage carefully. Some people start on one half tablet dosages. Eight months is very early on, so my guess is that you are on the standard Sinemet. My medical team believes that it is best to keep the dosage as low as possible for as long as possible. I started on half tablets of standard, and am now on one Sinemet CR every appr.4 hours. Some people take incredible amounts. I find that curcumin enhances the effect, in a harmless way, and curcumin with the first tablet of the day is a good idea. Everyone is different, your own journey is a personal one. I have been taking Sinemet since 2013.
The Chinese doctor was v worried. I was amazed. It doesn't stop me doing anything. It does get worse when a bit anxious.
Was a guest speaker last night at a function. By the time I had finished my hand was shaking so much I could not read my notes nut it stopped after I started moving. Found it v hard to control the tremor and think.
Is the tremor dangerous
I feel so much better on the Siminet. I take 4 a day. Can tell if I'm a bit late with my dose
Could it be that your Chinese Doctor is concerned that if you are not responding to the Sinemet that you might not have PD but rather one of the other similiar diseases such as PSP or MSA?
Moggy
I know heaps and heaps of people who may get some relief of their tremor with sinemet but not complete control so please dont worry. You are entirely normal - well PD normal 😊. Tremor is said to be the hardest thing to treat, uncontrolled tremor and dyskenesia are the main reasons to have dbs.
It is definitely not harmful or dangerous but it can be distracting for you and for people watching. I often preface a talk with a mention that I might shake but please dont feel sorry for me, Im ok or similar. Then if I do shake it is out in the open.
Sinemet is obviously working for you, it has improved your quality of life and you notice its effect. I think your chinese doctor either doesnt really know much about PD or is out of date. It would make me check out any other info she /he gives. (I have been on Ldopa ie sinemet, 8 plus years)
I was diagnosed in January and am on Madopar, but still have a tremor - in fact I feel much the same altogether as I did before I started medication. I'm due to see my consultant in September, but don't want to be prescribed stronger and stronger medication if it's not going to help. With a previous consultant I was prescribed an agonist, had really awful side effects and "sacked" that consultant when he wanted to increase the dose still further and give me tranquilizers or anti--depressants. It's really difficult to know how much of symptoms are due to Parkinson's and how much to medication. is Sinimet similar to Madopar? Utterly confused.
They work in a similar way. Perhaps you don't have PD. Do you have symptoms other than tremor?
Afraid so - difficulty movement, no sense of smell since 2003, less able to cope with stress, no knee jerk response, to mention a few. Sadly, both the consultants I saw seemed to have no hesitation in making the diagnosis.
Slow to move. Slow to respond. Clumsy. Stuttering walk. Conscious thought to make my lower leg swing forward. Poor use of left hand. Frozen left shoulder. Lack of balance Height temperature. Hot flushes These are the main indicators although all are better particularly when at home.
I don't know about Siminet and Madapor.
My limited understanding is that you should feel an instant improvement. I know that I did then levelled off. Since taking the Vit D there has been more improvement which has been more gradual. The resting tremor has remained the same. What I have noticed is that it becomes markedly worse when I am anxious about something then takes quite a while to settle back down again eg I was an after dinner speaker last week and the tremor still hasn't settled.
For me Mannitol, Exercise (when I can) and coconut oil. Avoid fast carbohydrates. It stopped my tremor, got my sense of smell back, improved my sleep (and resolved constipation).
How.do you take the mannirol
Is it tremor or dyskinesia?
Do Internal Tremors turn into Visible Tremors?
Did your external tremors 'start' as internal tremors?
PD or Essential Tremor?
