Some of the solutions I’ve found for MS symptoms are so simple I want to scream... this is one of them.
Has anyone else researched the link between high levels of iron and neurodegenerative disorders like Parkinson’s, MS, and restless leg? I ran across this article in the Lancet — and suddenly a lightbulb went on in my head about several “unrelated” factors and symptoms of my own condition:
Here are the seemingly unrelated things I have experienced that now make PERFECT SENSE! 🤯
- My labs show my iron levels are always high, despite the fact that I avoid red meat and don’t take any iron supplements.
- My MS symptoms worsened simultaneously with peri-menopause and reached their peak at menopause, when I was no longer consistently “losing blood” each month.
- For at least 2 weeks after I donate blood, many of my MS symptoms improve. Mental clarity and energy go up; nerve pain and muscle spasms go down; vision and balance improve.
The article referenced above suggests iron chelation therapies can reduce inflammation and improve neurological symptoms... I have also read articles listing the many unexplained (yet well documented) health benefits of regularly donating blood.
For now, substantially LOWERING IRON IS WORKING for me!! I avoid read meat and iron-rich foods; I read the labels on my multi-vitamins and (rarely eaten) packaged foods to make sure they don’t contain iron; and I donate blood every 2 months, which is as often as they will let me. ...I realize I feel better than I have in 5 years!
I want to slap myself across the face for not putting two-and-two together before... Has anyone else researched this link between high levels of iron and MS? Does anyone else out there use iron chelation or blood donation to reduce their MS symptoms??
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HensTooth
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My iron is exceptionally low, despite plenty of red meat. I was diagnosed at 37 yrs old. I have an IUD, so no more periods, and still borderline anemic. Even when I take iron supplements, it doesn't change much.
Hi, Thanks for the article. I am the direct opposite of you when it comes to iron. I am in the peri-menopause stage. My blood level is low. And I am anemic so I am taking iron pills and other vitamins to help. And this just started two years ago after being diagnosed with MS. Since than, I have had two blood transfusions.
Your conclusions are incorrect. This is not a matter of high iron causing MS symptoms. You have undiagnosed hemochromatosis, "iron storage disease," and the symptoms that get better with blood donation are symptoms of the hemochromatosis. Please make an appointment with a hematologist asap. (I am a licensed, board certified M.D.)
Thank you so much for posting this. It is often easy for those of us without training in the many medical sciences to read an abstract and jump to conclusions that lead us astray. I hope HensTooth takes your advice to explore this further.
Perhaps even more dangerous than reading an abstract and jumping to one’s own conclusions... is reading another person’s chat board post and jumping to diagnosis...! I don’t believe any medical doctor would presume to do so, and that’s quite unfortunate for us, because otherwise we could save a TON of money! LOL
No, my conclusions are not incorrect... Unfortunately, I do not have hemochromatosis, which would be easier to treat than MS.
Interestingly though, this whole thing started when I did a 23-and-Me, and the genetic testing told me I am at higher risk for hemochromatosis. I began researching it, and found that many neurological disorders like Parkinson’s and MS, are associated with excess iron in the blood and organs, and specifically, iron deposits in brain tissue.
Reading articles in medical journals, and doing our own diligent online research, is not a dangerous enterprise, as many doctors would have us believe. It is part of advocating for ourselves. Education empowers us to believe we are not just patients... we are partners in the research and treatment of our disease.
Please be careful as you go about shutting down discussions and declaring people “incorrect” — tossing in that you’re a “board-certified MD” just in case anyone doubted your authority to do so — without listening, contributing, or asking any questions. In my experience, we do not treat each other that way here.
Unfortunately, that’s the kind of treatment many of us have come to expect from doctors. Please reconsider how you approach the people who gather enough courage to express their ideas on this forum.
I was the opposite. My ferritin level was down to 4 and the restless leg syndrome was horrendous. I had a full hysterectomy and now my ferritin levels are normal, and the restless leg is greatly reduced.
Wow, I have never heard this! I am intrigued though because I myself have been taking iron supplements advised by my hormone dr years ago. I do not eat red meat so it was in fact low....but I am so going to check current levels. Many of my symptoms seem to be a bit worse, even though I am doing all the right things. Thank you for bringing this to our attention!
I suggest you read the other replies to the main post, the original poster likely has a blood disorder known as hemochromatosis. If you have needed iron supplements to treat iron deficiency, you should not be giving blood.
Hi dianekjs , that’s what’s funny about our respect for people in the medical profession. We are so impressed by their well-earned status in society and their many difficult years of study... It can make us treat them as deities; we bow our heads and step aside, and let them take over very important decisions about our bodies (or even our chat board posts!)
But please don’t forget, they are people just like us... They too can be mistaken, or uninformed, or quick to rush to conclusions without information.
This forum is full of lawyers and professors and all sorts of smart and clever people. Some of them do their own medical research, some of them attend workshops and conferences, some of them ask each other questions and gain knowledge from shared experience.
We shouldn’t disregard anyone’s contributions simply because a doctor has arrived on scene to make a proclamation.
I am happy that
Hest321 replied to my post, and she is perfectly welcome to add her thoughts to this thread. As is anyone else. That’s what this forum is for. It is for sharing.
I did not base any portion of my reply on the physician that posted's comment, in fact, I didn't see it until after I'd responded. I also have a medical background and am actively involved in medical research, my feedback is my own. The article abstract you cited doesn't draw any sort of causative link between excess iron and MS. However, I completely agree that Hest321 is welcome to add her thoughts, as is anyone else. I merely suggested she read the other comments that provide additional perspective before jumping to the wrong conclusion prematurely. Hematochromatosis, aka iron overload, is a hereditary disorder that is often treated by phlebotomy at intervals necessary to maintain optimal iron levels. Symptoms experienced with hematochromatosis are typically relieved after phlebotomy (or blood donation), such as they have been for you. I don't know if this is what you have, but it is the most likely possibility given your description of your situation and experience. I hope that you will decide to bring this up with a qualified physician to see how best to keep your iron levels at appropriate and safe levels. Best of luck to you, HensTooth.
My apologies dianekjs , your post began with “I suggest you read the other replies to the main post”, followed by a statement that I likely have hemochromatosis... I hope you’ll see how I might have misunderstood.
You might want to re-read the Lancet article, as it does state a correlation (albeit not not causation) between high iron levels and MS.
I’m glad you do your own research! Reading these discussions is also so important to finding our own solutions.
My doctors have already been consulted, and I do not have hemochromatosis, but again, thank you for being willing to join the discussion! I enjoy hearing everyone’s thoughts!
I have MS and struggle with iron deficiency anemia and have for years. I have to get regular IV iron infusions because I’m unable to absorb iron from the GI tract (malabsorption). You may have hemochromatosis, a genetic condition that causes excess iron. People with MS really shouldn’t donate blood until the cause of our disease is understood. It is technically allowed by some organizations but not by many others or in many parts of the world. You need to schedule a consultation with a hematologist.
Hi dianekjs , thanks for contributing to the discussion!
I am in the US, and have thoroughly researched whether I should give blood with a diagnosis of MS.
I have specifically asked at the American Red Cross and United Blood Services about MS; I have read through their pre-donation literature; and I have discussed it with my doctor. There is no reason I cannot give, and (quite the opposite of “technically allowed”) all the experts I have consulted have happily encouraged me to donate blood.
If anyone is taking a DMT, or other prescription drugs, they should be especially careful to read through the long list of drugs that can bar them from donating.
But make no mistake, there is an urgent need for blood!! One donation of whole blood can save several lives. Please don’t discourage all people with MS to stop donating!
Like many others have said i have the opposite problem as well. I have iron deficiency anemia. I have to get infusions every 6 months. I tend to vomit iron pills within 10-15 minutes. I'm also not allowed to donate blood as I was stationed in Europe during the mad cow disease outbreak. So 3 strikes I'm out. Life time ban for blood donation.
Peruzzot oh I’m sorry you’re not able to donate. It sounds like you would if you could! ❤️ Where I live, MS does not prevent you from donating. I always test very high on the finger-prick test, and narrowly missed the “mad cow window” having spent over a year in Europe in the 90s. I consider myself lucky!
I've been trying to find out how to donate my brain for MS and traumatic brain injury research. My parts can't be used for other people because of the mad cow unless rules are changed.
Thank you starlight5 ! Yes, it’s such a relief to feel better. The biggest difference I noticed is a stop to the electrical shooting pains that used to go down my arms (kinda like a funny bone feeling). Yesterday, I rode my bike down by the beach, with no balance problems at all! It was pure joy... I had a smile pasted on my face the entire time!
My neuro and PC don’t say much in general... For them, finding a diagnosis of MS (after many years of mysterious medical complaints by me!) was sort of an “end of story”. Like “Mystery solved! Maybe you can stop calling us now!” (LOL not really, but sort of.)
I have already had tons of bloodwork done. My labs always show higher levels of iron than is normal for someone of my age and gender (and diet), but the iron levels are not even high enough to be flagged. Hemochromatosis has already been ruled out.
I’ve noticed the same with blood tests for Chrone’s and gluten sensitivity. The tests come back negative, but people still notice a huge improvement in their inflammatory conditions when they remove gluten from their diet. I suspect my “iron overload” is the same. It’s not significant enough to be recognized as clinical, but it’s enough that making small changes can definitely improve my quality of life.
“In various neurodegenerative diseases, such as Alzheimer's disease and Parkinson's disease, changes in iron homoeostasis result in altered cellular iron distribution and accumulation. MRI can often identify these changes, thus providing a potential diagnostic biomarker of neurodegenerative diseases. An important avenue to reduce iron accumulation is the use of iron chelators that are able to cross the blood–brain barrier, penetrate cells, and reduce excessive iron accumulation, thereby affording neuroprotection.”
Just to be clear, I’m only opening a discussion... I do not recommend that anyone undertake any treatment without doing their own research, and yes, chatting with their doctor!
There are known health benefits to donating blood, and doing it on the recommended schedule does not present health risks. It’s something that MANY of us CAN do, if we want to help others.
Anyone out there who is concerned that I’m advocating dangerous treatments can rest easy! The blood donation centers will always test you for sufficient iron before you give. No one with even mildly low iron is allowed to donate blood!! 😅
HensTooth: What you missed, or do not understand, is that this Lancet article is referring to iron storage in the BRAIN. The iron stored in the brain is not affected one bit by fluctuations in the hemoglobin/hematocrit resulting from the donation of blood. In other words, you picked an article (that is, a short abstract of an article) that cannot support the analogy you are drawing with your own situation. I am not doubting that you feel better after you have donated blood. It very well may be that you feel better after donation because your blood viscosity is lower. Personally, I feel a bit tired and cold after I have donated blood. But usually my hemoglobin is barely high enough to donate, even if I wait 3 months between donations and take supplemental iron. I donate regularly because I have O negative blood and because I want to help other people. My MS diagnosis has not kept me from donating.
I am so glad you feel you can donate! And that your country is one that allows you to, apparently, even though you have MS. That is wonderful!
As for the other part... where you again assert that I don’t understand... The iron deposits in the brain are a sign of the body’s inability to regulate the homeostasis of iron in the body, blood, and CNS. The accumulation of iron in the brain is pointing to a larger problem; it is a symptom, not a disease.
I am not suggesting that blood donation or chelation can “cure” the iron deposits in the brain... I am suggesting that they may be a signpost that we should not ignore on our path to treatment.
Pathological iron deposition does in fact play a part in several neurological disorders. Conditions that manifest CNS iron overload secondary to the disease include Alzheimer’s, Parkinson’s, amyotrophic lateral sclerosis (ALS), and multiple sclerosis. I don’t think scientists entirely understand why there is an inability to regulate iron. I am only asking others whether they might have found ways to help iron dysregulation in their own bodies.
Is that alright with you? Can you allow me to do that? Please don’t automatically shut people down for wanting to open a discussion.
“Increased iron concentrations occur in specific brain regions in multiple sclerosis, most prominently in the deep grey matter structures, often with bilateral presentation. In white matter, iron deposits are usually located at sites of inflammation that are associated with blood vessels. Iron concentrations increase in many deep grey matter structures as multiple sclerosis progresses...
“The origins of iron accumulation are unexplained, but might be linked to inflammatory processes that alter the permeability of the blood–brain barrier thereby allowing iron-rich macrophages into the brain, and to disturbed axonal ion homoeostasis and aberrant expression of glutamate receptors, sodium channels, and voltage-gated calcium channels, leading to axonal calcium accumulation and degeneration.158 The inflammatory milieu associated with multiple sclerosis includes the activation of microglia and subsequent release of proinflammatory cytokines and ROS, inducing oxidative stress.40 Such an inflammatory milieu might cause the excessive breakdown of oligodendrocytes associated with demyelination, releasing additional redox-active ferrous iron into the brain and further enhancing oxidative stress.158 Microglia and macrophages take up the released ferrous iron (which is oxidised to ferric iron within the channels of heavy chain ferritin and stored within the light chain ferritin) and upregulate the concentration of ferritin, which can be seen at the edges of chronic white matter lesions and might be detectable in vivo with MRI.159–161 HO-1 is overexpressed in spinal cord astroglia in multiple sclerosis, which might lead to the induction of increased mitochondrial iron deposition in human multiple sclerosis plaques.”
A quick google search can turn up many other related articles on this interesting subject!
Thank you - your original link only went to an abstract and the article was hidden behind a paywall (would have been good to have posted the link to the full article first time around )
I haven't got time to read or digest the whole article in depth at the moment, but far too often false conclusions get drawn when people only access and read the abstract of an article. In the abstract that you posted the link to there was no mention of MS so no-one reading your original post or subsequent comments/ replies would know if you have accessed and read the whole article or not. This can lead to people to questioning how you arrived at the conclusions you did - i.e. were you assuming that that because the abstract mentioned "...various neurodegenerative diseases, such as Alzheimer's disease and Parkinson's disease" you were including MS in the term "various various neurodegenerative diseases" when the article (which no-one else could access or read) may not have included MS at all. So, if posting a link to an article and then wanting to discuss it, it is only fair that you give people access to the same information on which you are basing your own comments - and that is the article in its entirety.
this is interesting. I have been chronically anemic since i was pregnant with my daughter. She is 34 now. Regular iron supplements do not work for me and my body does absorb or metabolize them and they do nothing except cause major constipation for me so I get iron infusions when my red counts get below a certain level. It's interesting tho that some people have exacerbations and more symptoms with high iron and then some of us have the same symptoms with low iron..
wolfmom21fl isn’t it interesting? Yes, so many people here seem to have the opposite problem of low iron... That’s what’s so perplexing, I too have that problem with being unable to absorb vitamins and nutrients through my intestinal tract. My vitamin levels were very low and oral supplements did not raise them. I had to go to injections.
My iron since my youth was always on the low side. I am not sure anymore. I do not eat red meat or any meat. Very little dairy, mostly vegan. The only iron I get is from cooking from a cast iron pan almost every day. I have mostly been "slightly anemic" on tests because of my low iron. I have heard it is better to have low iron and that is the reason why some people give blood. I don't have to give blood. In fact, I was told years ago after my MS dx, they no longer want my blood. But supposedly, I can donate organs. No sure if that is true, but I am an organ donator on my driver's license.
I do not take iron supplements. I have never heard of a connection between iron and MS before. My MS is bad enough but I can still see, walk (with canes) and am in no pain. So perhaps having low iron helps. thanks for the info.
Your diet also sounds excellent! I’m sure that helps too! I have read that liquid dairy is horrible for MS symptoms and inflammation in general, while butter and hard cheeses are not as dangerous.
I want to emphasize again: I was told by the Red Cross that I could no longer give blood. I was a regular donator before my MS dx. When they called me about giving another pint, I informed them I had MS and was told that it was ruled not good to be a donator for their blood. Not for me but for them.
Per webmd: “In the past, people with MS couldn’t donate at American Red Cross blood drives or banks. That’s because doctors weren’t sure if you could pass MS to another person through your blood.
“But there’s no evidence that MS is contagious. People with the disease have been able to give blood in the US since 2007. If you’re healthy, on treatment, and your MS is under control, you should be able to donate at the American Red Cross.
“You’ll have to be at least 17, weigh at least 110 pounds, and feel well, just like any other blood donor. In some other countries, like the United Kingdom, people with MS still can’t donate blood.”
No, thankfully, I don’t tolerate blood loss very well, despite not being anemic. There is a correlation with blood donations and life span in men suggesting they could benefit from donating...so I’m thinking of asking hubs for a pint of his for my bday gift 🙃 I’m glad you’re feeling better and helping others is a nice bonus. The benefits you listed are exactly what happens to me when I have a nice level of blood ketones, so I understand why you are singing praises to your new found relief.
Ah... my OTHER great trick for feeling good... ketones! Yesss!!
I got flagged for ketones on my last labs, I was quite proud. Confirmation that my low-carb habits are working. My doctor wasn’t worried and just said, “You’re doing this on purpose, right?” I said yes, and that was that.
Oh I’m glad you brought up the blood-donor benefits for men! I have read of that too. I like your idea of a bloody birthday gift! 😱🤩
interesting discussion and great to see this forum at work and at its best - new thinking, different opinions, ideas, things to try, argument on why this or that might be right or wrong and much more...
We all experience MS differently. There are still many unsolved mysteries around MS, it is one disease or several?
This is such a heart-breaking disease to deal with, we owe to ourselves to share the good, the bad and the ugly, but always check with our respective medical care team before making any decision.
Thank you for the open-minded comments anaishunter ! I agree, I love seeing a willingness for lively discussion... Disagreement is absolutely fine, I just hope we are all respectful of each other.
I like that we are engaging in active debate! I hope people will always feel safe coming forward with new ideas to share.
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