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
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Esperanto
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Such a welcome feels very warm. It becomes clear that you are not alone and that is new to me. It gives me strength to find a way to deal with this. Thank you MBAnderson and others for your response and understanding.
Merci, for this additional information. It provides more insight into the matter that will hopefully allow the treatment plan to be adjusted in the right way.
Thank you for making such an important point Esperanto. I have had 3 neurologists and none has ever thought of suggesting a blood test (like you, I have done those independently). There would be great benefits for the patients if they could take a more holistic approach rather than sticking to just the prescription pad.
The exact nature of the tests was determined by my nutritionist but I would not necessarily recommend her.
Just be aware that those tests can be quite expensive. I probably paid between £350 and £500 for the full suite but someone on this forum told me that he had recently paid £800 ...
In the US, it's a lot cheaper when using online lab order using Quest, and does not require Dr's order. Typical insurance won't cover these tests regardless.
That's great to hear that Medicare covers it for you. I have BCBS and they don't, but it probably would depend on how a specialist is willing to write up for a "routine" blood work for disease monitoring vs a patient request. It's probably best to check with the insurance first especially since I hardly ever hear B6 test being ordered by MDs routinely.
I don't have PD but other neuro issues - my NHS neuro did test my B6, but it took two attempts, as the lab refused to do it first time. He was worried that my supplementing was causing neuropathy, but in actual fact it is lowish - still in range, but bottom quartile, so I have increased it.
Thanks, yes I've only ever taken P5P - neuro still wanted to test, as he didn't understand the difference. But I'm only 7% of range so that has been ruled out as a cause (and symptoms long precede P5P). We have a complicated family B12/folate history. (I thought I'd read something recently about insufficient cellular B12 making it possible to have neuropathy even from P5P (which resolves with sufficient B12), but can't find it. I certainly have heard of people taking B complexes with P5P who have tested high for B6 and had reduced neuropathy after stopping the complex, but of course it could have been due to something else in the complex.) Cheers
B12 deficiency can cause all manner of neurological symptoms. Regarding folate, high plasma levels are not a good idea - see my writing here: Folate Supplementation Carcinogenic tinyurl.com/ycdrz5lj
Thanks, yes I've read your piece before with interest. I don't take a lot of folate, and my level isn't high (it was higher when I was just using a small amount of folic in a multi) but adding methyl(tetrahydro)folate to my B12 made rather a considerable difference (positive) to my symptoms, so I know I needed some. Cyanocobalamin helped, methylcobalamin helped more and methylfolate better again. I think that is why neuro has referred me as this ties with my genetic SNPs, as well as me being the 5th of 6 known generations of B12D or PA. Best wishes
Just a few tweaks but nothing major. The supplements that matter most were either prescribed just after my diagnosis (e.g. mucuna, omega 3, curcuma, Q10, magnesium, D3, butyric acid, etc) or chosen by me (e.g. B1, L-carnitin, lions mane, Reishi, NAC, etc).
The blood tests were rather there to confirm that all is fine (PD aside 😄).
So sorry you went through this! Hubby’s had 5 different neurologists throughout the course and the latest MDS is the first to do a full B vitamin panel. (Thankfully) hopefully this becomes more standard.
In Ireland, where i live the protocols for testing, and indeed for neuro visits, are so low i had to figure it all out. Thank goodness this site exist. I trust drs very little at this stage. Keep walking! I do and it helps a lot. Your english is superb. Its also my third language...many of us here from different nationalities. We understand each other if the hearts are open. Stay well and stay in touch. Regards. Chelo
Good item lamboman! Pretty urgent for me right now. Tomorrow I will see my neurologist (maybe the last time? 😉) and will confront him with my extremely low b6 level. In addition, I only have the values of the also low b9 and b12 available, besides results of the "standard" measurements (here only a very low Creatine level and 10 kg weight-/muscle mass loss in 6 months). What other tests are absolutely necessary to get a complete picture of the imbalance due to PD and medication? Would like some ammunition to do my advocate role properly…
Merci! Very helpful. Indeed, I don't expect my neurologist to suggest this 🙂 However I do expect a more proactive attitude to avoid being behind the (measurable) facts. We will see…
My hubby is on his 4th neurologist. First one we didn't like at all. The other 2 went into a different field! 4th one is a motor disorder specialist but you could have fooled us.
None of them are even remotely concerned about the vitamins, supplements, herbs one takes.
We learned of hubby's low Vitamin B from the Lyme doctor who did extensive blood work. His body did not absorb Vitamin B's and has since taken a supplement based on the recommendation of the Lyme doctor. Unfortunately, since he was predisposed to PD, his Lyme morphed into PD. Same thing is happening to a neighbor of ours. Told him about the B vitamins and HB1 protocol. He is only 62. My hubby is now 83 1/2.
Stay on this sight and get a wealth of valid information. Continue to be your own advocate. It's a MUST.
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