This Is MS Multiple Sclerosis Community: Knowledge & Support

Please read the article that I posted at the end of my letter... I just question whether some of the anemia can be iron loading anemia. I was anemic when I was in my teens and 20s, but it cleared up later... after cast iron cookware became my standard cooking utensils... I am not saying that there is not iron metabolism problems represented by both ends of the spectrum, both too high or too low... I am just saying that no one has ever thought of phlebotomy before for those of us that represent a type of hemochromatosis. I am sorry but this is the first even speculation along these lines ever! I have PP MS and the only thing that has ever been offered is chemotherapy and I am aghast at that whole concept! For me, because I am part of that small market share, nobody ever has come up with anything NADA and if phlebotomy works for my type this will be a breakthrough of insane proportions.

Also, from studying on the hemochromatosis forums people feel better instantly when they lower the transferrin level... I expect to feel better quickly due to that. Haven't done it yet, so cannot verify just yet. But I do know that even three vials of blood removed gives me five days a better coordination/flexibility/less spasticity... I cannot wait to have more removed.

Please, I am not saying we have all the answers, but putting the spotlight on iron metabolism is going to provide some amazing relief to at least a subgroup... I am proud as hell for coming up with the speculations, and I am a proud as hell for the brave souls that are trying it, and I am proud of the people that continue the research into all aspects of how to help themselves... I am not blasting your by the way, I am not shooting the messenger, I am just stating that if one is not anemic, and they already see an association between menstruation and alleviation however slight of symptoms, go for it! We need to verify that this can help! Maybe I can help my friend who is 45 and in an adult nursing home, she has been on those birth control pills portion if it bleeds and now has that baclofen pump in her spine, she is in such pain I cannot bear to think of her. What if a few phlebotomies could help her! My God, it's so available! I don't know how much of the anemia is iron loading anemia, maybe some people do not outgrow it... there has to be some reason beyond anemia for MS disability... when I was anemic I felt great... not everyone would, there are no blanket prescriptions. I don't know whether some iron accumulation is caused by a lack of magnesium which is a vasodilator... I don't know whether eating say chocolate can exacerbate MS symptoms because it is so high in iron, there is so much we don't know. I am running out of time, since menopause my deterioration has become so rapid I fear I have maybe a year left before I am paralyzed... I sound angry right now, I am not, I am just hoping that people who realize they feel better after blood draws or monthly bleeding, will find a way to achieve greater health.

Just tell your doctor about CCSVI and the fact that iron is implicated. You need to know whether you need to take the iron in your vitamins. It's a fair enough request.

Good on you for giving blood and we'll all look forward to your report in March.

There is another MS lady over at the CDA hemochromatosis forum, who feels better after blood takes, and has these monthly cycles. We compared notes on porphyria and she had the eczema like rash too, on her hands for many years, she mentioned she also reacted to cheap metals. I do too, very badly, nickel allergy, it looks very similar to the porphyria rash. Both of us can only wear gold, pure gold. My skin takes the gold off anything that is just coated with it within a couple of days, and away the rash goes. I don't wear jewellery anymore.

Yes Bethr, even when I wore gold rimmed eye glasses they would leave a very dark ridge where touched my face!

Again, where are your lesions? This could be an exciting survey-to correlate brain lesions with hemachromatosis, and/or porphyria.

Bethr (again)
Where did you get the two quotes on the cutaneous porphyria and the MRI findings?
I want to take my MRI to a porphyria expert (just found one in my area), along with blood testing done a few years ago, and the source of the quote would be helpful to get him to listen to me.

Thanks!

Sorry Shye, I needed to go and find the letters from the neuro.
It's in my brain, single significant lesion on the left side, high signal on flare and T2 of 11mm length seen in relation to the left precentral gyrus (right hand motor deficit). Plus two tiny high signal areas in deep white matter of the frontal lobe and in the left centrum semiovale (not significant). Hope you understand that, I don't really I think my sisters are more toward her neck (?) but would have to check.

I'll get back to you on the link, I'll need to have a search, I read so much I lose track.

Cheers...........

Here you go Shye. I've been saying PCT, but it could be one of the other porphyrias or you can have more than one type. I definitely have the skin blisters since puberty, and the lesions and epileptic signs on an EEG.
Some sites say PCT doesn't cause neuro problems, others say it does.

http://emedicine.medscape.com/article/1389981-overview
Porphyria Overview
Author: Muhammad A Mir, MBBS, Fellow, Division of Hematology, Department of Medicine, State University of New York at Buffalo
Coauthor(s): Gerald L Logue, MD, Professor of Medicine, Head of the Division of Hematology, Vice Chairman for Education, Department of Medicine, State University of New York at Buffalo
Contributor Information and Disclosures

Updated: Oct 1, 2009

Good point! Thanks, Beth!

It would be better for me to get the testing done before the blood donation, so that I do not have to wait awhile afterwards. I can phone tomorrow morning to set that up. It looks like these should be covered:

Serum Iron
Total Iron Binding Capacity
Serum Ferritin
Transferrin
And the Transferrin Saturation can be calculated.

These standard tests would probably be included:

Hemoglobin
RBC
MCH
MCV

Am I missing anything to begin with?

ForeverSpring

Thanks Bethr,
eMed is a great resource.

Radiologist reading my MRI indicated I had multiple lesions in white matter in brain--don't think he specified where, I assume they are spread all over--need to look for that info; but any Dr reading the MRI can see where they are, so when I get MY MRI reviewed with porphyria specialist I will ask where they are specifically.

there are many places that take blood donantions in nj but not in Southern nj. so i ust ordered up a bunch of leeches. Do not laugh. They will be here in about 4 days.. Not sure how much blood one typically takes in bbloodletting. Supposedly a leeech takes up to 15ml per so 20 leeches aprox300ml blood in aprox 10-15 min. Leeches drop off when they are full and you store them in unchlorinated water .They can be used again in a month or so. Supposedlt the chemials they emit to keep blood uncoagulated is extremely good for varicose veins/spider veins. Sounds tad wacky butI'll let you know if it is helpful and then I can blood let as needed/ barbara

Wow Barbara
I admire your persistence! Not many of us would do what you are doing.
Please keep us posted. I imagine you are getting bloods tested between each bloodletting?
Wishing you all the best

Awesome, Barbara!

Please keep us informed about your experiences with the leeches. They would definitely be a convenience. You might inspire a trend here!

ForeverSpring

It sounds creepy , but if they do the job, why not. It's not like they haven't been tested out for centuries.
I'd have done anything to get rid of this darn iron too!
I have to thank you all for bearing with me in my search which I believe is now coming to an end.
I had mild iron overload which was putting me to sleep, and the porphyrins were causing neurological symptoms. PCT (Porphyria Cutanea Tarda) gives you iron over load if mixed with one of the hemochromatosis genes. But PCT doesn't cause neurological symptoms apparently. So we've probably got one of the more rare porphyrias. The one called hereditary coproporphyria seems to fit the bill best, but I'm off the the docs today, because I need to get the tests while my attack is active and the porphyrins are in my system.

This will be magic for my family. We have been sick for so long. Getting diagnosed with MS was a very bad thing as it stops your search and we had both kind of accepted what our lives would be like. Sleeping and lots of weird brain things going on.

I will have my life back.

The treatment will be to maintain low levels of iron through phlebotomy (because of the C282Y hemochromatosis gene), and we cannot eat any dairy products or beef, can't take hormone (contraceptive pills or a lot of other drugs that will make us react). No alcohol, no smoking.

My niece has this too, she has suffered from depression and anxiety since born, even as a baby we noticed it. She's had a life on anti-depressants and also got the very bad stomach problems that can go with porphyria. She spent a week in hospital with supposed food poisoning a couple of years ago, and the hospital never picked up the porphyria. She lost 2 stone and was off work for a long time. She was on the contraceptive pill.
I've had one of those stomach episodes in the 90's, now I look back I know what it was. I went from 13 stone down to just over 7 stone, was covered in those skin blisters. Doctors prescribed antibiotics for the infections in my skin, but that was it. Still undiagnosed. The reasons I had this episode was my gynocologist told me to double my contraceptive pill dose because I had a cyst on my ovaries. I can work that out now.

This is absolutely marvelous!!!!!!!!!!!!!!
There is a good database on all these drugs we must avoid. i have to get my two kids genetically tested and they will probably have to have the same regime if they got the genes passed to them. I can still eat other meats such as lamb (my favourite, and with many millions roaming the hills here in NZ, I won't miss beef).

Cheers everyone...................

Spent yesterday reading over various websites on hemochromatosis and none of them agree! The genetic mutation for hemochromatosis was only discovered in 1996! So understanding what happens to every individual with predisposition to iron loading is at the very beginning stages. My transferrin saturation was 44% when my test was done... I gather these tests jump around a fair bit depending on which day they are testing. This website says saturation should never be more than 40%... and ferritin never higher than 150. I have never had high ferritin, but that isn't always an indication for iron loading anyway. I have concluded that they don't really know how it all works anyway. Transferrin is a protein that deposits iron in places other than the liver... mine is too high I believe even all I am in reference range... I am going to print out the information on this website that says you can also do six trial phlebotomies to diagnose iron overloading. I don't think I'll get anywhere arguing with my Dr. based on the results on my lab reports, but I will be able to show him my skin... I still have a summer tan! It has faded barely at all... my Dr. is not a bad guy, I think he is just restricted by medical guidelines and he knows that I have discontinued things that don't work. I have an appointment on Thursday, and I have to phone the lab today to see whether it can just use my local clinic to have the blood drawn... my Dr. thought phlebotomy had to be done at the hospital, but I'm pretty sure I can just go to the lab with the requisition...

this website is very good...

http://www.americanhs.org/faq.htm

Please don't disappear Bethr! We need your brains! And we need to know how it all turns out for you and your family and whether your kids are genetic carriers too... I mean this genetic mutation for hemochromatosis could very well account for why MS seems to run in some families but also why it just suddenly appears in some families like mine. Nobody in my family has ever had this crap, it just came out of nowhere. But when you read the American hemochromatosis website, that is also of course common to hemochromatosis... I think we just unlucky enough to inherit the genetic lottery...