Doctor/Patient relations

PwP, don't be jealous of me because I have a doctor that is not letting holidays get in the way. I have a new neurologist that I am "training".. She is better at connecting with her patients than my previous doctor. I and her do not agree on the ideal dose for my Parkinson’s treatment. She is skeptical regarding thiamine hcl, B12 and also skeptical regarding the use of medical marijuana. Maybe we can compromise.

I have been on a low dose (CR c/l 50/200) 400mg daily for about two years with good results until recently. There has been a noticeable change in my symptoms. I want to get ahead of them. Not expecting big relief from tremor. Doc thinks my lab work should check for neuropathy as I have reported to her that my toes are numb. I described to her how Mayo Clinic paper on B12 and Parkinson’s identified numbness as possible relationship.

Today I communicated (yes! New Year holiday) with my neurologist. She will order B12 blood work for tomorrow. Regarding levodopa she wants me to take 1 tab c/l (100mg) IR five times a day and c/l 200mg ER at bedtime. Quote the doctor: “I don’t think there is a benefit of taking two tablets of IR 25/100 four times a day as it can increase the chances of motor fluctuations. This means extreme highs and lows of function.”

[Ajssister]

Thank you for posting Roy. Is your Dr. in central Fla? We are n I thought you might be also. Happy New Year

[Hidden in reply to Ajssister]

New Mexico

[jenniferdunstan in reply to Hidden]

Hello pardner. I live in New Mexico too. I live in ABQ. Is

your dr Dr. Jill perchance?

[Hidden in reply to jenniferdunstan]

My doctor is Karen LeCompte, neurologist, Gerald Champion Regional Medical Center, Alamogordo, N.M.

[Grumpy77]

Hi Roy, are you a neurologist! I extract that from your post as you say you are training a neurologist (doesn't read like a joke either)

[Hidden in reply to Grumpy77]

I wrote “training” in quotes to indicate alternative meaning.

[LindaP50 in reply to Grumpy77]

You misread and or misunderstood Roy.

[Hidden]

Am I wrong in thinking that at one time or another you believed that B1 stopped PD progression?

If I'm not, do you still believe that?

[Hidden in reply to Hidden]

It reversed my Parkinson's. Thiamine hcl is not a cure. It is a treatment that brings much relief to many. No one to my knowledge is using thiamine hcl as a product to sell. I learned about it from a newspaper article. I started B1. Having good results I communicated with Doctor Costantini to thank him and asked his advice on my dose. He adjusted my protocol. He did not ask for money. He did not try to sell a workshop or treatment at his clinic. He did not try to sell supplements or medicine. In his own words he has compassion and desire to help PwP and their caregivers. This FaceBook group's sole purpose is to spread knowledge and good news.

[Hidden in reply to Hidden]

Did you mean to respond to another post, Roy? You don't seem to have answered either of my questions.

[Gioc in reply to Hidden]

How does Roy know if "you are wrong in thinking," and then if you want Roy to answer only what you want, why don't you write the answer yourself.

Excuse me, Horace, how long have you been diagnosed with Parkinson, if you don't mind me asking?

[Hidden in reply to Gioc]

Surely Roy knows whether or not he thought/thinks B1 stopped progression?

I'm not sure if English is your first language, but I don't think there was anything wrong with my syntax or my question. The phrasing was used in order to reflect the fact that I cant remember whether he thought it stopped progression.

[Gioc in reply to Hidden]

I have nothing to say about the syntax of the question, but rather on the merit. Of course he knows, as each of us Pwps knows.

Maybe you miss the obviousness of the question.

Every single post written here by us PWPS on medicines, supplements, protocol or research is written with the thought on our part that it can stop the sad consequences of the PD.

It is perfectly legitimate to think so.

We Pwps always hope for a cure, you know the impulse to survive is innate in man and is very strong 😂.

I don't agree when you don't accept his answer and then forget mine.

[Hidden in reply to Gioc]

There's a pretty clear distinction between "provides therapeutic benefit" and "stops progression". It is probably the most important distinction in the PD sphere.

[Gioc in reply to Hidden]

Roy, take note!

for next time! This IS the right answer!

[ddmagee1]

I’m glad you have a neurologist you can communicate with! PWP need all the help and understanding they can get, when dealing with this disease, that can affect just about every body system, in some way or the other, especially those of us,where the disease has advanced, and it causes many problems!

[justjohn46]

sounds like we all wasted a lot of time and money roy on buying thiamine and taking it.my feelings anyway.it never helped me.regards just john.

[parkie13 in reply to justjohn46]

For whatever reason it does not help everybody. It's made a tremendous difference in my physical response since I have been taking it. By posting that negative comments you might stop somebody from trying it. I'm very sorry I did not help you.

[LindaP50]

You are So lucky! With your posts, perhaps we'll each learn something new. Thank you and Happy New Year!