I would have preferred to write about my coping with PD at a later stage, but in view of recent events I would like to warn you about the possible consequences of incomplete examination.
After being diagnosed 1.5 years ago at 65, I found the development of the disease to be (too) fast. There is still no any balance and certainly no "honeymoon" and that worries me. The only (visible!) complaint at the time, a hand tremor, has expanded to a huge list of typical PD symptoms, with the enormous fatigue and an almost simultaneous peripheral neuropathy in my feet and lower legs bothering me most. This despite the initial effectiveness of the standard medication L/C (increased from 400/40 in a relatively short time to 1000/130) + Azilect.
However, the relationship of PD and neuropathy is certainly not automatically recognized by the physicians, but to me the "coincidence" seems just a bit too easy. As a new HU member I was able to experience that I am indeed not the only one. On my search for the link between PD and N, the interaction between the B vitamins and the formation of dopamine came to light, especially the significance of B6 as so clearly described by member Jesus Marquez Rivera in his "Parkinsons Here and Now". The consequences of the love-hate relationship between the L/C medication and B6 appear to be far-reaching. The B6 necessary for levodopa to do its job is broken down by the equally indispensable carbidopa component, resulting in insufficient dopamine production. Moreover, a too low B6 level ( just like too high!) is extremely harmful and can cause irriversible neuropathy. Without any cooperation from my physicians, I was able to see for myself through additional blood tests at an earlier stage that I am quite deficient in vitamin B12 and B9 despite the extra vitamins taken as a precaution. Yesterday I also received the results of my B6 level. It turned out to be almost zero (1.1 ugl) far below the minimum standard of 8.7 ugl applicable here in France. Rather shocking….
I am glad to have clarity. Probably of crucial importance to break the negative spiral. The undoubtedly proposed further increase in medication by my neurologist will, based on the current information, have to be reduced precisely in conjunction with a balanced package of nutritional supplements including an optimal B6 dosage.
Of course, I am also angry. With more extensive blood testing at the time of diagnosis and monitoring of my PD, I probably could have avoided this unnecessary damage. The neuropathy will further limit my ability to walk in the future and thus the all-important extra exercise. But John Pepper, you can still count on me to try this with fast walking
Finally, a call to all neurologists! Make a full blood test, including the values of all vitamins involved in the process and treatment of PD, as standard procedure. An annual checkup of B6 should even be made mandatory!!! If you do not get any cooperation: DIY!
Please let me know whether elsewhere such extensive blood tests are automatically applied to Parkinson patients. If such extreme B6 values are measured more often and about the possible influence on the medication and disease process.
Thank you very much in advance for your response. Sorry for my broken English…. If it's easier you can also write me in D, F or NL.
I am enormously grateful that we can learn from each other in this way and cope better with our PD. Take care