Requested help for further training of neurologist

[Esperanto]

My introduction to the new neurologist was rather disappointing.  Apart from the fact that he did not even make any attempt to come across as somewhat understanding and social, this person again lacked constructive thinking about possible improvements to the PD and PN (peripheral neuropathy) situation. Each time, however, extensive testing is done so that after 6 months we can ascertain to what extent further deterioration has occurred and medication needs to be adjusted (increased).  Which means we are always chasing after the facts...... In vain I try to read the neurologist's mind and during the examination I force some speaking time by asking questions. That is then responded  with a tired look, but there is the courtesy of answering. Now I am pretty well informed by you, but HU could not yet give me a satisfactory answer on the consideration in my special situation for a C/L medication with more or less carbidopa. But luckily you have a neurologist for that! Probably because of my, like my English, poor French, he explained it even with a little drawing. There was no difference between Sinemet 10/100 and 25/100 IR. It was about the amount of levodopa. The carbidopa was only added because of possible nausea and stomach upset. Well, then you are speechless, whatever language you speak. 

So again the call about the C/L medication, who has the Pharmacokinetics, pharmacodynamics of both 10/100 IR and 25/100 IR (immediat release).

MERCI 🍀

[ddmagee1]

I can empathize with you! For five years now, my neurologist refuses to address my four limbed, peripheral neuropathy problem. He calls it pins and needles, and doesn’t even bother to examine my limbs. Each year I show him where it’s progressing slowly, up, from my hands and feet, into my arms and legs, by pinching my skin, which used to hurt to do that, but now numbness is there, and I don’t feel sensation! My neurologist shows NO empathy and NO understanding. He just moves on to some other topic! He is not a hands on Doctor, to begin with! He seems to enjoy lecturing, like a professor! Because I have to go by referrals from my family doctor, I can’t just change neurologists, because I am not pleased with some of this one’s action’s etc. Good luck!!

[Boscoejean in reply to ddmagee1]

possibly a little help??

healthline.com/health/perip...

[ddmagee1 in reply to Boscoejean]

Thanks so much for sending that link! I actually have all the autonomic symptoms, mentioned! I’ve complained to my neurologist about choking sometimes, with swallowing, urinary problems, sweating and temperature problems! He listens, and, like with the ‘pins and needles’ problem, says very little! He gives no advice, and shows no empathy and no emotion! I gather he gets tired of patients complaining all the time! I appreciate your support! It’s like I’ve said for the last five years on this forum, I get my best support and advice, and understanding, not from Doctors, Medical providers, or family, but from my fellow sufferers, of Parkinson’s Disease, in this forum! Thanks to all who contribute to HealthUnlocked.com! You are all a blessing to me!!

[park_bear in reply to ddmagee1]

Levodopa medication uses up vitamin B6, which if not supplemented can cause peripheral neuropathy and a host of other problems. P5P is the version of B6 to use. The other version, pyridoxine, can aggravate the problem. Details here: healthunlocked.com/cure-par...

[Boscoejean in reply to ddmagee1]

It always baffles me why specialists sometimes seem to have no idea how to treat some issues when you can generally find a lot of information in about 5 minutes if you google appropriately

I suppose you could print up this article for your neurologist then see if there is a response.

neurologyadvisor.com/topics...

[ddmagee1 in reply to Boscoejean]

Thanks for being so supportive! That truly means a lot to me! You know, I’ve tried to do that, print out studies and reports, and given them to both my family Doc and my neurologist! A good example of that, is when, recently, I had a bad bout of Ventricular Tachycardia, that lasted over three hours. My heart rate went up to 177 on average, and stayed there, according to my Apple Watch. I guess I was foolish and didn’t want to go to the ER, because of fear that I could catch COVID, and bring it home to my wife, who is a diabetic, in heart failure! Anyway, when I took a propanolol capsule, my heart rate went back to normal. I read an article, by a research group, that stated that 1% of PD diagnosed patients, die of sudden cardiac death, and there is no other causal factor, other that they had PD. I printed that article out for both my Docs, and they both dismissed it, and said that my episode of tachycardia was not caused by PD, in their opinion! A few months later when I saw a cardiologist, he said my EKG at that time, and when I had a monitor on, looked normal, so he couldn’t diagnose me with anything. He was dismissal of a PD connection too, so I got nowhere with all that! It was frustrating. I have not had any long episodes of the tachycardia since that time, so I hope it doesn’t happen again. I take vitamins and have stopped drinking caffeinated beverages! Thanks again for your commentary!

[ddmagee1 in reply to Boscoejean]

Boscoejean, this neurology advisor article gives me the information, I needed to know. It helps me to understand better what I’ve been dealing with, and continue to deal with. I seriously doubt that my neurologist would bother to put me through all the tests etc. mentioned in this article. It would be too much trouble for him to set all that up, and, also, I’m not sure what the costs would be! I suppose if I printed the article out, and gave it to the neurologist, I could ask him what he thinks!

[Boscoejean in reply to ddmagee1]

I hope he will look at it

[LAJ12345]

I think they are all trapped in the year they graduated with no further advancement! Since many are 60+ that was the 1960s.

[puretone]

Isn't it the case that carbidopa/benserazide are combined with levodopa for their enhancing effect, improving the efficacy of levodopa by a factor of 3 or 4? As nausea is a potential side effect of levodopa the reduced dosage required can lessen the chance of nausea. But I think your post suggests that you are aware of that.

[Esperanto]

Indeed puretone, I am concerned with finding out the effectiveness of the carbidopa or benserazide to balance and maintain the levodopa plasma level with a maximum of result and a minimum of side effects. You are talking about a 3 to 4 x higher effectiveness. The studies that provided the necessary information at the time probably predate the internet age. Perhaps the reason why the in my opinion simple question about the Pharmacokinetics, pharmacodynamics of the classic (immediat release) CL medication has still not been answered. It is the information on which the pharmaceutical companies at the time, in my opinion, determined their rather rough random early choice for 1:10 and 1:4 and still apply it after 50 years. No discussienota found. It would almost make you a conspiracy theorist.

In the only graph I found that includes levodopa without addition, there is about 2 à 3x higher effectiveness due to the added carbidopa. Especially the longer half-life maken it interesting. It concerns a data research from 2007.  “The Pharmacokinetics and Pharmacodynamics of Levodopa in the Treatment of Parkinson’s Disease” B6 Soo-Peang Khora and Ann Hsub,* 

ingentaconnect.com/content/...

A few things can be distilled from the graf of the original research by Bianchi and others around 1970. Assuming that this is the 1:4 C/L, I have drawn in red what that could mean for the 1:10 version. Please note that this is an estimate with the application of unclear data, but it at least gives an impression to what extent C and L relate to each other. It is a mystery to me why Pharmacokinetics, pharmacodynamics are not included with every PD drug (mandatory)???

Perhaps there is someone among you who can still provide better data. For clarity it concerns the Pharmacokinetics, pharmacodynamics comparison of immediat release IR (10/100 and 25/100 IR or 20/200 and 50/200). There are plenty of graphs of the later CR and ER versions.

Fig. 1 Concentrations of levodopa in patients with PD treated with oral of levodopa in the presence and absence of carbidopa, probably 50/200 (1:4) In red I estimated 20/200 (1:10)

Fig.1