I've experienced the simultaneous development of severe PolyNeuropathy (PNP), dominant in the right leg, leading to foot drop, and PD (also right-dominant) in my 50th year of life. There may have been previous signs of either, but there had not been any other serious health problems before.
This coincidence has puzzled every neurologist I've talked with, and I wondered if anybody else has made similar experiences? Given that these two diseases developed in the same body at the same time, I doubt that this is just a random coincidence, but cannot really think of a plausible common mechanism either.
Many thanks!
Written by
Ethin
To view profiles and participate in discussions please or .
I have the same problem with these double troubles. No indeed very unlikely that that is a coincidence. My neurologist had to admit after more than a year that the cause lies in a deficiency of B6 and an overdose at a later stage. I now have my B6 checked every 3 months (still without the cooperation of the doctors) and seem to have found a balance at the moment. Park_bear has written about the B6 vicissitudes before.
I advise you to study the cause of a consequence well, and of course test it!!! It is rare for the doctors to do so of their own accord. Do this as soon as possible, because with more than 50% nerve damage, as in my case, recovery is usually no longer possible. So this is not necessary!
Cipro does indeed seem like a horse remedy, especially for PD. I was familiar with the interaction with Azilect (rasagiline) and the reduced dopamine levels, but not the severe neurotoxity. The FDA warnings are very serious: accessdata.fda.gov/drugsatf...
Thank you for letting us know about the risks of Peripheral neuropathy, which can also occur less acute so that you do not immediately make the link with PN. Fluoroquinolone antibioticst like Cipro can cause serious or disabling side effects that may not be reversible and should be used only for infections that cannot be treated with a safer antibiotic or rather without it. Art has given us an example of a great home remedy for UTI.
Indeed, I only started on levodopa recently, three years after PD / PNP diagnosis, so that cannot be the reason for the PNP.
So I seem to fall into the category of the observational study cited by Boscoejean above: "... PD patients had a higher prevalence of preexisting polyneuropathy that cannot be explained by adverse effects of antiparkinsonian drugs." However, even in that study, the prevalence of PNP in untreated PD is very low (0.29% ), so it's not a common comorbidity, and still puzzling to me.
For some time I suspected an autoimmune disease as a potential shared cause (e.g. Sjogren's disease is frequently linked to PNP and occassionally with PD, and I do have some signs of autoimmunity, such as raised ANA and some other factors), but immune-modulatory therapies (cortison, IVIG) haven't done much for either the PNP or PD (which is confirmed to be neurodegenerative).
Many thanks, Art, for the pointer on IR! I wasn't aware of it and will look at it, but do not really fit the symptoms mentioned for it.
As for the supplements mentioned to battle PNP, B vitamins, alpha lipoic acid, melatonin, curcuma, anti-inflammatory diet.., I have tried most of them, without noticable effect (well, they do help general well-being 🙂).
Hi Ethin, before you start taking medication/supplements I would first try to find the cause. The PN does not fall from the sky. So research and TEST! Don't waste time by taking supplement cocktails 'ins blaue hinein'. 🍀
Agreed! Unfortunately, there are many tests one can do on the potential causes of PNP (or PD) and I've had quite a few (long lists of markers in the blood and CSF, genes), without definite findings. So in the desperation of wanting to do at least _something_ (a feeling that I am sure many people on this forum are familiar with), I've tried some of the recommended supplements. But I am definitely open to, and grateful for, concrete suggestions for further tests, such as yours on B6.
It just remains a sad fact that the healthy working of the nervous system and its degeneration is still quite poorly understood, so there seem to be few certainties.
That's absolutely true, but you can focus on the relationship with PD.. That initially eliminates a whole group of less likely causes. One of the few neurologists who raises this is Rafael Gonzales Maldonado. For me his book “Ecological therapy for Parkinson's disease 2023. Medication, late and little” was at least for me an eye-opener and inspiring. Especially by showing the coherence, not only with regard to the medication but also with your lifestyle.
A brief update. Had the B vitamines checked, and they are ok, although B6 may be a bit on the low side (on the other hand, B12 and B1 are quite high, probably from previous supplementation).
So the search goes on. Testing insuline resistance is next up on the list.
Thanks for this update Ethin. Always nice to hear how the searches are progressing. Given the results maybe good, if B6 levels are a bit low, for de B balance to supplement some extra with the safe P5P form. 🍀
My concerns started with pins and needles and numbness on my right side. I thought I was having a stroke the day I got diagnosed with Parkinson’s. I have thought this was common in PD?
Here is another illustration to indicate the importance of getting a grip on the PN. For me an extra motivation to do everything in nerve regeneration.
At the moment I am doing a long distance walk near Girona in Spain (Cami de Ronda) for 2 weeks, culminating in the 'ascent' of the Matagalls in the Montseny mountains as a birthday present. I do this on my own, because this anti-stress drug and the exercise is for me the ideal PD treatment. According to my doctor, this would also be excellent for the PN. To reduce the load on the backpack this year without a tent, but in hostels.
Unfortunately, after a few days I already have to adjust my plans, the pain and loss of strength in my feet due to the PN are suddenly extreme. Very painful also because I just have my PD somewhat under control, while now my favourite activity is at risk due to PN. I may have just encountered the cause of this on the internet. Several articles strongly discourage heavy strain on the feet (and this is the case with these hikes):
“If you have nerve damage in your feet, avoid repetitive, weight-bearing exercises, such as jogging, prolonged walking, and step aerobics. Repeated stress on feet that are affected by neuropathy can lead to ulcers, fractures, and joint problems. Choose exercises that do not put stress on your feet, such as: Swimming.”
Fortunately, the trail runs along the Mediterranean...
Completely agree with you on the positive impact of exercise. And because of the described strain of jogging, which I liked to do but find impossible now, my favourite current activity is prolonged (Nordic) walking on a sandy beach, which has a softer impact on muscles and joints, but requires balance and the activity of many different muscles.
In any case, your route sounds absolutely wonderful and I hope you can manage to enjoy the remainder of it!
A short update. The 2 week hike in Spain has nevertheless ensured progress with walking. Probably the problems were due to the overload on my feet with a 15kg backpack. Due to the PN that will no longer be possible in the future, but for the time being the hikes in the mountains remain guaranteed, from experience the best and nicest PD exercise!
I also experienced the onset of PNP at the same time as symptoms which resulted in a diagnosis of PD a year later in March of 2023. My neurologist has not found a connection between the 2 conditions yet.
It will soon be cherry picking time in this part of the world. Perhaps a 2-week cure is recommended given the favourable results for Neuropathy I encountered in this 2015 study. “Tart Cherry Juice as a Treatment for Peripheral Neuropathy”
Maybe you can add 🍒to your PN list Art. Cherries also turn out to be a panacea for PD and many other ailments. lag lag has already paid attention to this in HU with “Tart Cherry Juice & 1MD Liver Supplement”
If you eat too many cherries, it may also help against constipation...
Don't take the pills again right away, but enjoy the fresh fruit! However, cherry picking doesn't even seem to be as easy for us as this research shows:
Neuroscience: Decision-making in Parkinson’s disease and cherry-picking dilemmas
Thank you! Looks very promising, but it has been for many years. Always new follow-up studies, but still in rats and mice and I don't think it is in humans yet. Abwarten und Tee trinken, But the tea is now cold and the neuropathy is not getting better.…
Well, apparently the same team also started a medium size clinical trial- unfortunately, the only info I could find about it is in German: nachrichten.idw-online.de/2...
But I agree, progress here is frustratingly slow, slower than neuropathic progression in any case.
On the positive side, proprionate is a readily available, affordable supplement with little side effects, so it’s one of these things one may want to add on, just in case. (I have been taking it for about a month now.)
Very promising. The investigation was scheduled to have started in early 2022, over a 6-month period. Maybe we can call the research leader Anna Lena Fisse for an update. Understandable that you started experimenting yourself. Based on what information do you determine the dosage?. I'm curious about your experiences!
I just wrote to Dr. Fisse asking for more info on the study and potential results. I will keep you posted on what she replies.
As for dosage, I am afraid I just did what it says on the package... daily recommended amount 1000mg. Of course, that may be too little if taken not as a supplement but as a medicine. Let's see what the study protocol says.
Personally, I have not experienced any _drastic_ improvements in the PNP since taking the proprionate - which I would not expect anyways for a condition that has been present for several years. But it may be part of a package for generally improved well-being during the summertime, with less stress, more sleep, more sun light, fresh air, more exercise etc., which also leads to the PNP being less present subjectively. In any case, as I tolerate the proprionate well, I plan to keep it up for the moment.
Indeed, it will be a matter of long haul... If an improvement is at all possible, it seems to take up to a year. Also Dr. fisse's research runs over a period of 9 months. But I think it's a good plan to make a modest start. Do you have any advice for a Propionate supplement? I saw an advertisement from a German manufacturer Zein Pharma mit 2x 500 mg Propionsäure per day. Seems reliable to me.
Great that you asked Dr. Fisse already for an update! 🙏
No particular product recommendation... so far I've used this one: amazon.de/dp/B0BRKWK38D?psc... and for replenishing I just ordered this one: amazon.de/dp/B09KCLYLB1?psc... (although it has 750 mg instead of 500mg, so I need to think again about doing). Probably a good idea to vary the supplier from time to time , as I am not sure how trustworthy they all are.
Very kindly, Dr. Fisse already replied. Patient recruitment is still ongoing and expected to take at least another year until completion (not really a surprise as they are not a particularly large institution and planned to include 60 patients with CIDP which is a relatively rare condition). But they are currently doing an intermediary analysis the results of which should be ready 'in the next weeks'. So indeed, Abwarten und Tee trinken 🙂
One important point, their protocol calls for the standard amount of 500 mg proprionate twice daily -- so in a way I am already close to the halfway point of the trial period..
… and at least in one case, proprionate appears to have helped in the recovery of a patient with an acute form of neuropathy: ncbi.nlm.nih.gov/pmc/articl...
Maybe you know the article about the Bochum neurologists who also simulated the activity of the intestinal bacteria by giving 100 patients suffering from multiple sclerosis propion salt that converts to propionic acid in the intestine. The patients felt significantly fitter, more energetic, more alert - experienced a kind of upswing and were less susceptible to infections. The same seems to be the case with Alzheimer's and PD. So taking propionic acid might mean something for both PD and PN!
Just realized that I completely missed the point of your question about whether proprionate helped with my PN: I honestly haven't seen any substantial changes (towards the better or worse) during the last months. And a neurophysiological assessment two weeks ago did not find any changes either compare to last winter. But then, I wouldn't really expect drastic improvements in PN over such a short period. So I'm happy to give the proprionate at least a year and then have another look.
That would also be too good to be true after such a short period, but in any case your PN has not deteriorated and that is already a boost. With me after a month propionate ditto. To be continued. Thanks for the update!
The news item may refer to one of their earlier studies of proprionate in the context of MS, e.g., sciencedirect.com/science/a...
I have not yet found any human studies trying to ameliorate PD with proprionate -- but we know that gut and microbiome are highly relevant in inducing PD, so that could happen soon.
As for my N=1 ... Do I feel better now than I did 3 months ago? Definitely yes! In particular, I have much more energy now than I used to and that makes a huge difference for everything else as well. Do I know why? NO, since I started using proprionate at the same time when also starting with a few other things, such as weekly exenatide and longer glove sessions.
My hunch is that the gloves make the biggest difference, followed by summertime (you know how important that is 😀👍) and the encouragent of outdoor exercise that comes with it, and then proprionate and exenatide. (Plus I keep taking some other supplements like ashwagandha and vitamins B, D; not to forget a substantial daily amount of C/L: 3x2x 25/100). So I cannot pin down the fortunate positive effects to any single factor, only recommend the whole regime 🙂. If only summer would not end soon..
Yes as per my above posts I also have neuropothy in both feet and hands My drs also say it makes no sense. I take Gabapentin and it works but has terrible side affects..dizzy and spaced outTake lots of supplements but no success
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
The Social Consequences of PD
Martial arts and PD
Finding Joy in the Midst of PD
Have any of you had peripheral neuropathy prior to PD diagnosis?
