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It seems my iron readings are not normal either, are they?
Iron 27
TIBC 50
Saturation: 0.54 (!!!)
Ferritin 133
Transferrin 113
Time to make an appointment with hematologist and get some phlebotomies going, thank you Merlyn and everybody else for all the research!

I read this discussion thinking ' try to see the wood for the trees'. This chat room is about MS not other diseases. Yes iron is a factor in MS BUT I have not seen evidence that iron within MS lesions could be reduced by the therapies being proposed (let me know if I missed it). After CCSVI diagnosis and therapy it is reasonable for pwMS to have an iron screening and adjust their diet to help their body maintain an healthy iron level.
I do not understand how chelation etc would remove iron from the MS lesion or know of any evidence for it. This thread may confuse pwMS so please remember -
First Step - Get Tested for CCSVI

Kind regards,
MarkW

Thank you for the replies.

So after reading - http://www.ironoverload.org/diagnosis.html

These tests are sufficient for the iron panel:


Serum Ferritin
Serum Iron
Total Iron Bindin Capicity


Is this correct?
Will this let me know if i have an iron overload, which would suggest CCSVI ?

Are these tests clear enough to verify CCSVI, if im positive overloaded with iron, will the trip to Poland be wworthwhile = i will have CCSVI ?

Thank you

Hi after I tried leeches and a little progesterone cream to induce heavier perord I had a nice heavy period and felt much looser and energetic for 1-to end oftwo weeks. Now end of third week going to forth super tight again. Generally alwys felt improvement with period. But when they are lighter not so good. I was walking up stairs albeit not beautifullyand much more mobile. Now at end of 3 weeks in cycle tightening up a lot. Neck aches siff mobility bad always worse right before period betteras soon as bleed. Deferiprone doesn'tseem to make huge difference but maybe not taking enough. I am thinking about get a blood let at my docs tomorrow to check reaction. Please let me know exact tests to have for iron panel I had several not great levels but not I think ones you consider gold standard. Thanks Barbara Oh how much blod should I take tomorrow around 500ml? Is once a month good for you or 2x?

AdamT-you need to also test the transferrin, sometimes called the transferrin saturation. Most of us are not showing up with extraordinarily high ferritin, but we are out of whack with the transferrin, the TIBC... although as far as I can figure out, the lower the ferritin the healthier you will be. I don't think it should be over 25 if you have iron loading going on.

Finding out the root cause of my primary progressive MS, and now knowing how to treat it is the most extraordinary revelation. My improvements are holding, I have only had two phlebotomies , and am looking forward to doing the proper amount over time. My experience shows that we have no understanding of this disease. Spasticity is not obviously just central nervous system problem, otherwise I would not have had the extraordinary relief from one 500 mL blood removal. It amazes me that people are buying into this whole CCSVI theory without testing iron. It is just a blood test, what the hell is up with that? Why the resistance? The relief that you experience when you find out that your iron metabolism is the cause of your problems is so tremendous. The weight that is lifted... I have hope again.

jak7ham9-I have had two phlebotomies, 500 mL each. The first one I would say alleviated about 20 to 30% of the spasticity, and that improvement has remained. The second phlebotomy seemed to allow better arm movement, not extraordinary, but noticeable. I can now keep my arm in a "chicken wing" posture without it pulling back inward... but the second phlebotomy seem to affect my bladder mostly. I can empty much better, there is much more force. I have had terrible bladder issues, and I just did not expect this to ever improve. It is astounding. Please go ahead and see for yourself. I know what you are talking about vis-à-vis the tightness, hopefully you will find relief... I think it depends where your body pulls the iron from, but you will see some form of improvement, let us know.

MarkW-you are new to this, I started this thread because I did not know how many people were following the Phlebotomy, Anyone thread although a lot of people have been reading... please go back there and see how many people are testing positive for hemochromatosis type profile. Have you ever had any Dr. tell you to test your iron metabolism? No, I don't have to ask, because I know they have not. You cannot conclude in any sense that iron is not problem in MS unless you test for it. End of story.

People that are running the proper iron metabolism panels are finding out that they have a problem with iron metabolism. End of story. Sometimes it's anemia, but more often it is hemochromatosis. I'm sorry, but until we started to ask some questions, I had never ever ever ever ever heard of MS being related to hemochromatosis. This is our discovery, and it is not bad science because it is so easy to prove through standard laboratory testing. Your advice is terrible. Why are you telling people to spend thousands of dollars on CCSVI investigations when they could be doing in iron metabolism blood test and getting to the root of their health problems? No one is telling these people to do anything harmful or invasive or expensive! Unlike CCSVI. I personally do not react well to MRIs, I think they react with the iron in my brain. I do not tell people to do MRIs, I think they are dangerous. I am simply telling people to do a blood test, and get to the root of the problem. The fix is easy. The fix is inexpensive, very effective, and very proven. What gives you the authority to tell people to not do a simple blood test? What gives you the authority to tell people to spend thousands of dollars on an unproven operation? I don't see all that many people reporting great great results with this angioplasty, and it has killed some. Why are you telling people to risk their lives? It seems to be helping some, but it is not a guarantee of anything. A blood test will guarantee that you know whether your iron metabolism is normal. Most are not.

Also, don't you realize that they are putting people on iron chelators after the CCSVI... according to you there should be no benefit from that. So why are they doing it, and why aren't you questioning that?

Phlebotomy has been used for decades for hemochromatosis. What is new is the discovery that a whole bunch of MS seems to be caused by hemochromatosis/iron loading. My science is better than yours.

Merlyn wrote:AdamT-you need to also test the transferrin, sometimes called the transferrin saturation. Most of us are not showing up with extraordinarily high ferritin, but we are out of whack with the transferrin, the TIBC... although as far as I can figure out, the lower the ferritin the healthier you will be. I don't think it should be over 25 if you have iron loading going on.


The relief that you experience when you find out that your iron metabolism is the cause of your problems is so tremendous. The weight that is lifted... I have hope again.

Thank you Merlyn for this reply

As far as i know the lab can only do the 3 iron tests i mentioned, however tomorrow i will call them and ask if they can do 'Transferrin test/saturation' /.

Are the other 3 iron tests i listed nevessary too for a cearer picture?
or will less be ok? if so which ones shall i have done...

i only ask as it is quite expensive, but if it can help me i will happily do them all.

You mentioned the relief you get when you have the rwesults of your iron motabolism test/s, but what treatment do you then use to get this relief?

or do you mean the results would suggest you have the CCSVI, so you know treatment will help you?

thanks

AdamT, to find out your transferrin saturation % it is not a separate test, it's just the serum iron as a percentage of the TIBC. You can work it out yourself (but it is usually noted on the test anyway).
If you look at the test results noted above ie:

Iron 27
TIBC 50
Saturation: 0.54 (!!!)

54% above is just the percentage of iron/TIBC, ie: 54% is 27/50

If you get serum iron and TIBC thats all you need.

MarkW wrote:I read this discussion thinking ' try to see the wood for the trees'. This chat room is about MS not other diseases. Yes iron is a factor in MS BUT I have not seen evidence that iron within MS lesions could be reduced by the therapies being proposed (let me know if I missed it). After CCSVI diagnosis and therapy it is reasonable for pwMS to have an iron screening and adjust their diet to help their body maintain an healthy iron level.
I do not understand how chelation etc would remove iron from the MS lesion or know of any evidence for it. This thread may confuse pwMS so please remember -
First Step - Get Tested for CCSVI

Kind regards,
MarkW

Mark,
Thank you for your post. Very well put.

Also want to say that I have no idea how iron is related to CCSVI. All I know is that when I have blood taken I come alive again! It's dramatic!
I load iron because I have a hemochromatosis gene, I know that much, and if i get rid of some iron I come right, I feel like i did in my teens.

I developed my one and only lesion when my iron levels were at their highest in 2008. Just lucky I happened to have a blood test two weeks prior to my lesion developing. I already had the fatigue.

I don't know how it couldn't be related, it must be.

A lot of people who have tested are anemic, but not many on here seem to have normal iron studies, that's for sure. The ones that have shown up with the hemochromatosis gene seem to benefit greatly from having iron removed and getting their ferritin down.

It's certainly worth having a simple iron panel blood test.

I also don't know if this thread should be under the heading of CCSVI. I did way back suggest it gets it's own section, but the mods didn't act.
Their choice.

We do know according to swank that a low saturated fat diet helps MS. Maybe it is the low red meat consumption (i.e lower iron consumption) that helps.

I am not entirely sure that I have iron issues I will ask for the TIBC and serum iron levels to be tested again. (also I will ask them to add the calculations for the transferrin saturation so its in black and white;)


Also something else I have noticed is Enzymes and their role in regulating porphoryia and iron, toxins and heavy metals.Maybe through healthy diets and/or proteolytic enzymes iron loading and porphyria can be controlled. I am about to start an enzyme therapy to see if it helps. . Any thoughts?

Tell me about Enzymes, I've done lots of research on porphyria but haven't come across it.
Cheers..........

I have to be honest I do not know that much about porphyria! I read the following:
Porphyrias result from genetic deficiencies of enzymes of the heme biosynthetic pathway. These deficiencies allow heme precursors to accumulate, causing toxicity. Porphyrias are defined by the specific enzyme deficiency. Two major clinical manifestations occur: neurovisceral abnormalities (the acute porphyrias) and cutaneous photosensitivity (the cutaneous porphyrias).

I would assume the enzymes one takes are not the same enzymes that regulate porphyrias, but maybe taking enzymes can give the body a chance to concentrate on other metabolic functions as the proteolytic enzymes taken can clean up the toxins and proteins from the blood etc

I have started taking some enzymes, no big changes yet but I am going to start taking the stronger ones next week when they arrive.

AdamT-Bethr is right about the iron tests, sorry my mistake, that is all you will need. I don't know whether I have CCSVI, and if I do, it would not matter anyway because Zamboni says we have too many veins clogged up with iron, too close to the brain. I have no interest in this operation, even if they could do it, because I don't believe it is addressing the root cause. I personally believe that what they are seeing is the result of iron loading. I have detailed much of this on the other thread, and nothing I have seen over the last few months has changed my mind. The more people that test their iron, and the more people that find it out of whack, the more the truth will out. We can identify very easily to people who are iron loading with a simple lab test. The treatment is then "bloodletting", yes that medieval concept. The modern term is phlebotomy. It is the most effective way to reduce iron, and actually I gather the safest. Each 500 mL removed, removes about 225 mg of iron. The normal person will have a store of about 3 g of iron, total, people with hemochromatosis can store anywhere between 0-50! 50 g of iron! This poisons all of the organs, and usually by the time people get diagnosed with a full-blown hemochromatosis, they will have diabetes or cirrhosis or heart failure... I feel lucky that I have identified iron loading and myself and I have had a most amazing reaction to two phlebotomies. My spasticity decreased 20-30% from the first phlebotomy, and that was just such an amazing relief. I was literally getting to the point where I thought I could not live with the spasms and pain. That improvement has stayed, and the second phlebotomy seem to help my arm range of motion but most of all the bladder. My guess is they could do about another 20 without becoming anemic. Since this is never been done before, I cannot even speculate what other improvements might be in the offing. I have had no bad reactions, only good and I am looking forward to being the first person in the history of the world to reverse primary progressive MS through phlebotomy. I no longer believe that we have any clear understanding of this disease whatsoever. So to think that CCSVI might be the only answer is ridiculous. The body will pull iron from storage return to homeostasis or health once the offending substance is removed. Steve from the Iron Overload Diseases organization said that I probably have at least 6 g of iron stored that I must get rid of. I have only removed half a gram and I've had that much positive response! I have no idea if I can totally regain mobility, Steve says it's likely. He says he's seen amazing recoveries from neurological conditions like epilepsy, which you would not associate with complete recovery, but he has seen it, the body has amazing recuperative abilities once you identify the underlying problem.