My peripheral neuropathy has suddenly increased. I’m trying to not be scared but I am. I’m 46. Since my early 20’s my feet have gone numb on exercise machines. Now I’m waking up with tingling dead feeling limbs. It’s difficult to stand still like at museums for example bc I feel like I will fall over if my leg decides to go numb on me. I believe my whole system is affected because I barely sweat, have very low blood pressure, very dry skin , and get extremely weak in the heat , etc etc. With so many other symptoms to research and attempt to address, I have postponed researching neuropathy until now that it is so bad I must.
I have read that Vitamin B deficiency can be a factor but I take a B multi. Am I not absorbing it?
I have extremely low sugar, sometimes in the 50’s so I know I’m not diabetic. ?
Among the potential causes of compression that are not stated in the figure are spinal stenosis and compressed disk.
B12 deficiency is another possibility. Some people have difficulty absorbing B12. To sort out these possibilities you will need medical testing / imaging.
Excellent visual aid. Thank you! I have the stocking glove sort although I have elbow length gloves. B12 looks to be a good starting point. I just stirred Park Bear cinnamon in to my smoothie. 😊 (and lions mane, fish oil, cocoa, turmeric, and collagen. It’s a gross smoothie.)
I take adenosylcobalamin from Seeking Health. There is evidence that it mitigates
"Missense mutations in Leucine-Rich Repeat Kinase 2 (LRRK2) [that] cause the majority of familial and some sporadic forms of Parkinson's disease (PD)."
I can only speak from my experience, but a high dose of B12 (as part of a B complex) relieves my neuropathy. I take 1,000 mcg of B12 twice daily (total of 2,000 mcg daily). My numbness/tingling/neuropathy is limited to my right arm (affected side) from the top of my shoulder to the tips of my fingers.
I will increase my B12 and hope for the best. Thank you for sharing how much you take. I have been only taking 360mcg. The form I have is methylcobalamin. Is that the type you take? Would you mind sharing the brand? I just found out that my B1 is likely the wrong type so I am now reevaluating everything.
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I also take 1,000mcg daily of B12, in particular for my PD tremor, but it addresses your neuropathy symptoms as well CC:
"Deficiency of vitamin B12 produces protean effects on the nervous system, most commonly neuropathy...."
Thank you! Any particular brand or form? Do you take high dose thiamin as well? I’m taking 500-1000 mg a day or Solgar B1 but I think it’s the wrong form. B vitamins are getting confusing.
The study being discussed recently has been about B3 , nicotinic acid to slow progression. But I thought B1 was supposedly able to slow progression and reduce symptoms.
And I now believe I have a B12 deficiency.
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I let my daily multi-vitamin supplement handle my B1 Thiamin (and most other B vitamin) needs, but you are correct, taking additional Niacin B3 may help (which I do). I just take generic Rx brands of B3 & B12, keeps my supplement costs down.
"These results suggest that niacin enhancement has the potential to maintain or improve quality of life in PD and slow disease progression."
I have greatly reduced the supplements I take. In addition to the 2 doses of the Apex Super-Methyl, I take 1 to 1.5 grams of Solgar Thiamine HCl, 125 mcg of D3, and 600 mcg of TruNiagen, a form of B3. I also take 30-50 mg of melatonin at night. For awhile, I took virtually every supplement someone suggested might be helpful. Mentally, it was helpful to know I was at least trying, but financially and physically, most of the stuff was not helpful as far as I can tell. I've settled on high levels of virtually every B vitamin along with Vitamin D and melatonin along with the coronet duo red hat twice per day and 1 Sinemet three times per day. I feel good. That's all I can hope for.
30-50 mg of melatonin, that is a lot. How do you feel in the morning? I understand it is very beneficial. I am taking 10-15. I would like to take more but I’m concerned my body will decrease natural production of it. Maybe that is not a valid concern? May I ask what the Apex Super Methyl is for?
I’m still at the “taking an insane amount of supplements” phase.
After reading Chartist (Art's) posts about melatonin, I upped my dose. Quality sleep is still an issue for me sometimes, but it seems to have helped with sleep in addition to the benefits described by Art.
You can click this link to obtain a list of the Super Methyl ingredients and benefits.
Japan has higher 500-550 limit for b12 to be normal. USA has a lower normal limit. I had lower b12 since I cannot absorb it through diet as properly. I started using B12 folate and B6 lozenges through Amazon. Now my B12 and Floate levels are above 500 and I feel better.
2. Are the doctors reasonably sure you have PD? I don't remember what your specific symptoms are. Could it be it's just neuropathy or just PD or is it both? I thought I had genetic PD but the doctor told me just recently because of a gene test that it's more than likely from the environment.
3. I'm sure you have already checked for side effects, different than interactions, of each of the meds and/or supplements you are taking?
Hi Debbie! I’ve had mild neuropathy since college. And very low blood pressure since high school. My PD symptoms are still mild but it’s a very long list or symptoms all pointing to PD.
What led you to believe you had genetic PD?
My Dad has it and I believe his mom did as well but she went undiagnosed. Despite this the neuro says it “might not be genetic.”
I will revisit supplement interactions. Thank you for the suggestion.
On a happier note, although my neuropathy has increased, all of a sudden my arm swing has returned! It had been 5+ years of no arm swing and suddenly it started swinging!
B12- don’t take cyanocobalamin. Look for one with methyl, and adenosyl cobalamin as you likely have a defect in you mthfr gene which means cyanocobalamin can’t be properly converted.
Also don’t overlook circulation and the lymphatic system. See exercises at bottom of this post
For me, every time I try taking a vitamin B supplement -- whether it be B1, B12 or a B-complex, after a few days my eyelids start twitching. Drives my crazy. Maybe I was taking too much. You might want to think about taking a short break on using the vitamin B supplements. They could be making your neuropathy worse. I have had peripheral neuropathy almost since the beginning of my PD symptoms (20+ years ago). It started out as pins & needles sensation in my hands. But now it's mostly temporary numbness in my arms and legs, especially when I'm sleeping.
B12 is helpful but I’ve found that apple cider vinegar daily is very helpful. I mix 2 tablespoons in two to three cups of water and consume it over a few hour period. That way it doesn’t irritate my stomach.
Sorry to hear you're having a tough time cc. As we've discussed a few times, look into the methylation test I've recommended sooner than later. It'll help reveal MTHFR defect or other b12 gene polymorphism that may affect nutrient absorption/conversion, especially pertinent since you've been dealing with this since your 20s. Your 3 generation PD may be due to nutritional deficiency or enzymatic defect rather than the well-known familiar PD genes already discovered.
In the meanwhile, instead of swallowing pills, try a sublingual route (keep under tongue until gone) since you may lack intrinsic factor to absorb b12 through the gastrointestinal route, especially if combined with pernicious anemia. Try Jarrow's sublingual methyl b12 first, then look into other forms as necessary. You may also opt to try b12 injections by your Primary physician and see if that improves your symptoms immediately.
All Bs are important and they all work together. B1 is the team leader and a spark to an engine, and the rest must work together so you cannot be deficient in any (including the minerals Zn, Mg, K, Cu, etc) or it'll be akin to a stuck cogwheel on a clock (while rest ramped up in cycle) where you'll become symptomatic with deficiency when any is lagging. B3 overdose can severely deplete methyl donors as well as decreasing platelet counts (weakness) while causing stress to the methylation pathway as well (especially if undermethylated, again the test will help), so be sure to be careful with over-supplementation or try balancing it with TMG (1:1) for methyl donors. See more niacin discussions below.
Thank you Rescuema! We have done tests at home with a service my husband signed up for but not methylation test as it is not offered. I’m going to schedule an appt with a Functional Med Dr. and hope they will order a methylation test?
I will order the Jarrows sublingual. 👍🏻
I’m awaiting the iodine drops to arrive.
I increased the B combo that I have and within 2 days I had a big improvement. Amazing to me!
The GDX methylation panel may reveal much more useful info than other tests. See below to find a participating Dr. or walkinlab online seems to offer the test kit through mail but I'm not familar with them. If not GDX, then you can also try a limited basic test through a service such as Life Extension (see below on a sale).
You can also consider Alpha Lipoic Acid (ALA) as it has shown in studies to be helpful for treating neuropathy at 600 ~ 1200 mg/day. It also has reparative effects!
The following study is interesting because they combined the already mentioned B-12, SOD or Superoxide Dismutase (which melatonin increases), ALA (as already mentioned and a potent antioxidant) and Acetyl L Carnitine which has shown synergy with ALA in other studies all combined in one pill to good effect.
Thank you Art! I take ALA and melatonin. I recently learned that CBD is good for the gut and is anti inflammatory. If you have thoughts on that, please share them.
Spurred by your response I just restarted Acetyl L Carnitine. I’ve heard that AM consumption is best for Acetyl L Carnitine. I hope it’s compatible with TUDCA. Amongst other things, I take that in the AM.
Before bed I’ve been taking magnesium, zinc, melatonin, NAC, CBD, and Liposomal Glutathione.
SOD and Baicilin are new to me. I will do my homework!
Based on an ALZ study I have just increased my PB consumption. I’m unaware of how that works with other supplements and timing is a challenge.
Regarding CBD, I can't really comment as CBD has become such a broad term that encompasses many different products, some of which are useful and some of which are just about useless. Melatonin is also good for the gut and is likely depleted in PwP due to reduced Short Chain Fatty Acid production, but primarily butyrate which normally boosts melatonin levels in the gut. So the fact that you are taking melatonin should be useful.
The ALCAR is also of benefit in PD and can offer benefit during the daylight hours when melatonin can't. If you haven't yet, read the ALA + Baicalin study link in my post as those were good results.
Cervical stenosis and lumbar nerve compression caused some of my neuropathy which was somewhat remedied by surgery.Treating B12 deficiency remedied more, and then a Qsart sweat test and skin biopsy diagnosed Small Fiber Neuropathy which can cause body wide symptoms.
A tilt table test diagnosed the autonomic dysfunction.
There can be many reasons as varied as we are, but it is important to not just write off everything to PD.
There might be something fixable. I hope you can get some answers.
Thank you for the link - have never heard of holotranscobalamin before - there is always something new to learn!
Quick update; I have increased my intake of B12 to 1,000 and amazingly my neuropathy decreased dramatically in just a day. It is like going back in time 3 years, when it was an issue but not decreasing my productivity. I will still seek out testing ASAP but wanted to share this info in hopes it helps or uplifts others.
This looks like something that I need to try. How did you come up with the 1000mg? I searched through the mayo clinic article and didn't see a dose mentioned.
Hi cc ~ I don’t know if this helps but for sublingual B12 we switch between Solgar 1000mcg and EzMelts B12 2,500mcg. I’m not sure if the cost. Seldom is anything not expensive these days. Good luck and continue to persevere!!!
For those who take vitamin B12/cobalamin, in my opinion, it is the safest drug/vitamin/mineral/herb there is. Why? If go to a Dr for a B12 deficiency you will receive a series of oral B12 pills or injections and then a monthly 1mg maintenance dose (injected/swallowed) of 1mg of cyanocobalamin or hydroxocobalamin afterwards. b12-vitamin.com/treatment/
If you are in a fire and suffer from smoke inhalation EMTs will give you a B12/hydroxocobalamin intravenous dose of 5,000 mg over a 15 minute period. Meaning: A 5,000 mg dose is equivalent to 416.66 year supply of B12. If your body does not respond to the first 5,000 mg dose, another 5,000 mg dose will be administered in about an hour and a half. Meaning: you will receive an 833.33 year supply of 1mg B12 shots. A cyanokit for cyanide poisoning. cyanokit.com/
So if you are worried about the dose of B12 you are taking it is perfectly safe to take more to see if there will be added benefit. The most B12 I have taken was 15,000 mcg=15 MG per day and I took 5 mg/day of methylcobalamin for years, perhaps 4 years. Methylcobalamin is the most potent form of B12. Here is an article about the safety of B12: stichtingb12tekort.nl/engli...
Fascinating and reassuring information. B12 , B6 and folate are essential for reducing homocysteine levels. I wonder what the upper limit is of B6 and folate?
I have not yet researched this.
Also, I have yet to gain a clear understanding on how B1 works to reduce our symptoms and whether it is neuro protective or just symptom reduction? I’ve read a lot of enticing speculation.
B12 being water soluble, you just pass the excess obviously but do you determine your absorption via a test? Was your high dose B12 beneficial?
I would not explore an upper limit for either B6 or folate because, especially with B6, there are possible negative consequences. High dose B6 is associated with peripheral neuropathy and here is an interesting study which attempts to explain why.
The vitamin B6 paradox: Supplementation with high concentrations of pyridoxine leads to decreased vitamin B6 function
"In conclusion, the present study indicates that the neuropathy observed after taking a relatively high dose of vitamin B6 supplements is due to pyridoxine. The inactive form pyridoxine competitively inhibits the active pyridoxal-5'-phosphate. Consequently, symptoms of vitamin B6 supplementation are similar to those of vitamin B6 deficiency. "
The following information page about B6 notes that P5P has not been studied and thus it is an open question but...
"Impact on Brain Cells
P-5-P drives the activity of over 100 enzymes in your body. It’s especially important for brain health. Enzymes that create the following neurotransmitters need optimal levels of P-5-P to work [42]:
Dopamine, which controls motivation, attention, and feelings of pleasure
Norepinephrine, which improves mood and cognition function
Serotonin, the “happiness neurotransmitter”
GABA, the mind’s natural calmness signal
Acetylcholine, the driver of rest-and-digest activity that also boosts cognition
Whether or not supplemental P-5-P reaches the brain and affects these neurotransmitters in humans is still unknown."
Finally, the reason why carbidopa/benserizide is added to levodopa is to prevent the conversion of levodopa to dopamine in the body. Carbidopa chaparones levodopa to the blood brain barrier then levodopa passes through the BBB and enters the brain. In olden years levodopa was not accompanied by carbidopa and it required a much higher dose which was accompanied by nausea. The conversion of levodopa in the body is sped up by taking vitamin B6 with levodopa.
This article, from 1974, shows the relationship between pyridoxine, carbidopa and levodopa.
Levodopa, Carbidopa, and Pyridoxine in Parkinson Disease
Though carbidopa prevents the conversion of levodopa when taken with B6, I would take B6 some other time of the day away from your Sinemet/Madopar dose.
As for folic acid, I do not take folic acid, I take the bioavailable form which is called methyltetrahydrofolic acid (methylfolate). Upper dose of folate? Take pregnant women as a model:
"Synthesis of the monoamine neurotransmitters serotonin, dopamine, and norepinephrine is regulated by L-methylfolate, a derivate of the vitamin folate."
"....I have yet to gain a clear understanding on how B1 works to reduce our symptoms and whether it is neuro protective or just symptom reduction? "
That is a hell of a good question and I am not going to hypothesize as to how thiamine works. That said the following article spotlights possible reasons why thiamine is good for PWP.
The beneficial role of thiamine in Parkinson disease.
B12 is an interesting vitamin because of its safety profile and possible therapeutic uses. The net effect of B12/methylcobalamin on my health has been one of increased energy. I was B12 deficient and when I first took sublingual B12, I was super energized for 4 days and then my energy levels leveled out higher than they were before.
"...approximately 50% of the vitamin B12 will be delivered to the liver and the remainder will be delivered to other tissues."
Silvestrov, you are a knowledgeable person and I am glad you mentioned Carbidopa. I have recently asked several questions in relation to its role (and others regarding Levodopa; e.g., its weird non-stop activation of dopaminergic receptors). Search for forum posts containing the word "fraud" in their title.
Unfortunately they have so far remained unaddressed. So, unless you find the following one about Carbidopa/Benserazide too naive or childish, may I repeat:
***
That dopamine in the periphery causes nausea is a fact and that the amount of Levodopa into the brain would be reduced is another fact. However, we are still trying to fathom the following point : The L-dopa decarboxylase enzyme is known to be active in serotoninergic, noradrenergic and dopaminergic neurons and the pineal gland (serotonin from L-tryptophan) but cannot be found elsewhere in the body, including the blood. In these conditions, how come its inhibitors (e.g., carbidopa, benserazide) are supposed to track it in the periphery of the brain? If it is to be found in blood, then all of us would be dying since that enzyme has the power to destroy (in plain English: decarboxylate) all aminoacids (necessary for life).
So what, a commercial fraud (with patents behind) ?
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Please note that I am modestly echoing unattended concerns I have heard of or read elsewhere.
Hi cclenonade, you can try taking high dose of Vitamin B12 everyday over a few months to see the outcome. I take Vit B12 everyday at minimum of 2,000 mcq to keep the burning sensation at my feet at bay. You may also check with your doctor to see if you are diabetic and if so then immediate diet control with exercise will be most crucial and essential.
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So, in summary, what should I do/not do?!
what should I do?
B1 Therapy question
Destination wedding terror... what would you do?
