is the doctor right? my encountr with my new neuro
 

Recently I had following conversation with my new neuro doctor which went like this after she made the objective medical examination:

Doctor: You have an advanced PD and you are exessively undermedicated.

me : But Doctor I am feeling really good apart from the action tremor which is uncomfortable to some degree. I have a life style suitable to my personality and I am having a good time.

Doctor: You are slow but you seem not to notice it.

me: Doctor, I know that I have a serious disease and I have adapted to it.

Doctor: You are denying your self a good quality of life.

me: but Doctor, I am really scared of L-dopa medication. Can you tell me what length of time it will work and possible side effects?

Doctor: No ..Nobody can tell but we will deal with it when it arises.

me: You mean more drugs.

Doctor: I don't know why you waited 6 months just to see me if you don't accept my medication. I am an expert in PD. (if this is your attidude) you should stick to your family doctor.

(me thinking I have no choice ! There are no option of having another doctor's opinion ..The Canadian health system in Calgary do not provide this 'luxury' and I waited 6 months for the appointment and was scared to loose the system support): ok doctor I have to go along.

The doctor put me on sinemet gradually increasing the dose to 9 of 100/25 a day.

By the way the doctor never smiled during the encounter and left us without saying good by but said she wants to see me in 3 months.

That is a hefty dose of sinemet. Why not stockpile it for "if needed" and start planning how to switch neuros?

The point I want to make in this thread
 

The point I want to make in this thread is that the 'objective' yard stick of doctors have little to do with overall wellness of the patient but follows a text book formulae which the doctor is obliged by law and professional rules to follow. My encounter with this particular neuro was a horrible example of being treated as an object of medical business and not as a human being.

Actually I do not blame this doctor (an assistant professor) who is only doing her job in a big merciless machine. but for mor details:

This doctor told me that according to her assesment I am in a bad shape and need heavy medication. But in fact I feel fine. I don't have any problem in mobility (I walk and run normally), no problem in balance (I can stand on either feet and count to 30 or 50), sleep well, no swallowing problem, no constipation, sexual activity normal, no stiffness, I get up normally, I change sides in bed without a problem, no drooling. I exercise heavily 2 hours a day. Above all, I am really happy.
My problem is only tremor and memory deterioration. I can live well with these symptoms and told her so.
I was diagnosed about 4 years ago and resisted up to recently the ldopa medication because it is known that it is not so effective for tremor and memory treatment.
Now here I am being forced to take medicines in heavy doses or else I loose all support of the medical establishment.
My visit to the neuro did not make me feel better .. but rather the opposite.
I am reminded of cancer patients who are told they have few months to live and the poor soles usually oblige ONLY because they believe what they are told. WELL I CHOOSE NOT TO BELIEVE 'SCIENCE' WHICH TELLS ME I AM NOT WELL WHILE IN FACT I AM WELL.
Imad

grrrrr
 

You are just a small person Imad, like the people that the CEO of BP cares about so much! lol

I would stockpile the sinemet too, there are shortages just try to determine an expiration date. One of my worst, panicky thoughts is being
a refugee without meds.

Why would a neuro start a guy out on 9 25/100s a day? That is downright scary it sounds on the surface to be unwarranted. Imad, if you want to talk about that dosage, can you list what you feel comfortable telling us again so we don't have to go look for your histories.

when were you dx
what have you taken as treatment so far and for how long [each please]
what are all your symptoms?

if that's too personal, i understand.

written at the same time as imad's above. A formula you mentioned? That's scary too. hey what is it like living in Canada. You are a quiet nation....a formula does not sound good. There is no formula. Or it sounds as if she has the wrong 'formula' so she wasn't an MD?

Dear IMARK3000
 

I, too, have seen a University doctor and have been less than satisfied with his suggestions. Like you, I also understand that it is the training received to treat disease and not patients and did not fix blame on him.

I went through a similiar experience. I was sent to a Mayo Clinic symposium to listen to the then director of the Mayo Clinic in Rochester. MN. talk about Levadopa or brand name "Sinemet," with a rumored limited usage early on causing an undocumented toxic effect after long term usage as unfounded.

I took his message to heart, and increased my dosage. I ended up in the emergency room, put in a medically induced coma, and had my body flushed of all medication and towins. It was a medically drug induced holiday , in an attempt to save my life. I had dyskenias so severe, my Kidneys stopped functioning because they could not handle the protein entering my system due to the muscles breaking down.

Not all patients have this reaction. Mine was possibly caused due to the fact of my Parkin mutations.

Think hard and educate yourself as much as possible about your condition. I had a DOPA-SCAN (PET) and the test showed severe to moderate progression. I also had a gene test and found out about my genetic mutations. I then went online and searched for my specific mutations, and found research about treatments specific to my illness and found DBS was extremely effective for patients with my specific attributes.

It was a fight to get an neurologist to allow me to have the surgery. I did find one willing to let it be "Up to me." and I had the surgery. That was five years ago, and I have had little progression until this past year.

I am surprised the Doctor you saw did not suggest titrating you onto the the Levadopa, as it has a reputation as causing much stomach upset at first.

Good luck with making a decision to treat your illness.

Vicky

Imad,
Many neuros and MDS now believe that it is very important to keep people on as low a dose as they can while maintaining effect. I suggest that if you haven't done so already, you watch the videos, especially the second one, that Soccertese recently provided a link to, and look at how they are discussing l-dopa and the consequences of using it.

There were mistakes made in the past where people were given too much, when it was much less understood, and it resulted in long term problems. The idea should be to start low, increase gradually, and back off if there are side effects, all the time taking it very slowly.

My own neuro is very wary of increasing my dose which is currently 4 and one half tabs 100/25 plus entacapone. (that is after 7 years on it....) He constantly emphasises keep it low. Because not all the l-dopa gets absorbed a low dose can be made more available with the use of entacapone, or given in the form of Stalevo, or as CR etc....... I am not a doctor, of course, and can only recount my own experiences or reflect what we have understood from the totality of knowledge that we have gleaned over the years.

It still seems a very large dose to be starting you on..........

One possible way for you to find out more, in a direct way, without challenging anything or needing to find another doctor, is to discuss this with your pharmacist. They are often a good source of information, and can be very helpful. Also you could try contacting your local PD society, they may have advisors there. Another possibility, is that you gain access to a Parkinson's nurse specialist, if you have those in Canada. Perhaps your GP might know......

Lindy

Imad,
Sounds like the neurologist saw what she believed you were like "on paper" but ignored the reality of your condition, how you are truly functioning. This lack of insight may unfortunately be encountered in any country, not just Canada. That having been said there are many astute and caring clinicians as well and the one good thing about our health care system is that we do have access to any of them, regardless of socioeconomic status. Universal health care is a matter of pride but is not flawless, one down side being that it takes time to wait for the appointment. But it seems that a wait in your case should not be too much of a problem as your level of functioning prior to this recent change in meds was quite high.
As you do your research into another neurologist with whom you have better rapport (suggestions from other PWP, local support groups, your doc, forums), your family practitioner should be able to manage your condition since it seems pretty stable (correct me if I'm wrong). As a primary care physician myself, I do this regularly in many different situations when I end up re-referring if my patient comes back to me unsatisfied with their specialist's appointment.
Wishing you luck in your search!
Soania

Imark-

Something worth considering in searching for a new doc: Draw up a questionaire of no more than a half-dozen questions. Include an SASE and a short, polite cover letter explaining your purpose and asking for his/her attention. Put a lot of time and thought into those questions. The answers must be short and revealing.

If he answers, you will have something to go on. If not? If he doesn't take the time to complete such an easy task as this he's not worth your time.

-Rick

I think a new doctor would probably be a good idea too. You hired your doctor to give you advice and it's your choice to take it or not take it. Either way the MDS gets paid. And eventually, you may have to take it. I resisted meds for 5 years and had quite a few of the conversations with my doctor you described. I screamed uncle this year and since last January I'm now up to 3-4 25/250 a day. The stress of work doesn't help any.

One another note, how is the medication treating you? Any relief? The only thing I've noticed is that if I eat immediately after taking the dose my stomach gets terribly frustrated with any thing I give to it.

neurologists in canada
 

imark, since you live in Canada, are you aware of the forum based at U of Toronto?

Parkinson's Information Exchange Network (parkinsn@listserv.utoronto.ca is the email of the forum based in toronto). madelyn