Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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MS and hemochromatosis

Does anyone have possible MS as well as hemochromatosis? My husband has only one C282Y mutation which probably should not be so symptomatic but has very, very high ferritin. The docs are also looking at possible MS as well as hemochromatosis. I see some info on the internet about earlier onset of MS with the C282Y mutation.

So......while we wait for more testing, does anyone have MS symptoms? I just started browsing but I'm seeing some stuff on iron regulation and MS. Plus, I see posts on other boards relating to this.



just the other week on fox news on sunday morning, the two doctors said that there was a link with iron in the brain and ms.

Before they figured out my HH. I was thought to possibly have MS although no lesions were ever found. I did discover i had a B12 deficiency and neuropathy that seems to be permanent now. It too was misdiagnosed. I have had almost all the symptoms of MS including optic neuritis. But B12 levels lower than 400 for greater than 3 months can cause permanent nerve damage of all kinds. And even affect the mind as far as memory and etc. I would love to hear more information if you find any. As i am told to have an MRI every other year to watch for lesions. I never received a spinal tap to check for MS though. And honestly, even with only one gene of hh, if your iron levels are affected... it is essentially affecting you. My sister, mother and father are all carriers with c282y and they all have b12 problems ( since my diagnosed they all got tested) . And they also were instructed to not take iron supplements and take it easy on vitamin C and etc. As their body may not be affected at all, but it could be very likely to have issues with iron not to the degree as mine, but enough to cause damage. They were also instructed to follow up with doctor yearly and give blood as a donor to keep healthy. ( they can donate where we live since they are not tech HH patients) i have a blog i just started if you wanna check it out and read my story. I hope all is well!

I have many questions about the connections between MS and hemochromatosis, here is a brief history of my family:
I am a 58 year old male just diagnosed last fall with HH. My mother came down with a very agressive form of MS in the mid '60's, was bedridden by the early '70's and died of congestive heart failure in 1978. Our family is now convinced she also had HH. She had been a non-drinker all her life but also came down with cirrhosis of the liver, suffered from type 2 diabletes despite being of normal weight and always had a nice "tan" even after becoming bedridden, she was also born and raised in Ireland. I have 3 older sister the youngest of which suffered heart failure in her early 40's and received a heart transplant, this heart also began to fail after six years and she received a second transplant but died of complications several months later. I have contacted the transplant team and they confirm that iron overload is not routinely tested for in these cases. My second oldest sister tested positive for HH after I did and is now also receiving treatment. My oldest sister has MS, thankfully less aggressive than what our mother suffered from and she has tested as a C282Y carrier only. the connections between HH and MS seem too much to be coincidental to me.

I would have to agree that there is a connection there that is not quite understood. I was diagnosed with HH a little over a year ago, and have tried to get my family to get tested. My dad has MS and have told him about the reports that I've heard about the connection. He told his doctor to see what his iron levels are and his doctor's response is "your iron's fine", but he didn't tell him any numbers or even what iron level he is talking about. There is too much overlap to just be coincidental, but with many doctors just now recognizing and accepting HH as a problem, it may be some time before they figure out the connection.

Hi PJ, I haven't seen any MS traits in my HH family tree. That said, and as you're noticing there is a tremendous amount of research on iron's possible role in MS and other brain/mental issues (park, alz, dementia, etc.).

I am looking for an inspired hematologist who is up-to-date on HH, iron, and other blood disorders. I find most hematologists to be narrowly focused and not all that helpful.

Has your husband shown any MS symptoms? In this study on iron and MS, it was shown that iron is present in MS patients, but not early/pre-MS CIS patients. http://www.medpagetoday.com/clinical-context/MultipleSclerosis/29420

Some other articles:

"Multiple Sclerosis Tied to Iron in Brain"

"Italian doctor may have found surprisingly simple cure for Multiple Sclerosis" http://www.gizmag.com/ccsvi-multiple-sclerosis-ms-cure-zamboni/13447/
"Italian Dr. Paolo Zamboni has put forward the idea that many types of MS are actually caused by a blockage of the pathways that remove excess iron from the brain - and by simply clearing out a couple of major veins to reopen the blood flow, the root cause of the disease can be eliminated."

"VITAMIN B12 & IRON DEFICIENCY WITH MULTIPLE SCLEROSIS" http://www.livestrong.com/article/510958-vitamin-b12-iron-deficiency-with-multiple-sclerosis/
"Research demonstrates an association between vitamin B-12 and iron deficiencies with the onset of multiple sclerosis"

I'm looking for more info and Drs who are tracking the new research emerging around an old drug from the 50's (Clioquinol) is now a possible chelator specifically targeting iron deposits in the brain.

Here's a set of links I recently sent my sister who also has HH (and hemolytic anemia and cold agglutinin syndrome).

Clioquinol is mentioned in these studies:

"Iron accumulation linked to neurodegenerative diseases"

"Iron Chelators as Potential Therapeutic Agents for Parkinsons Disease" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2756717/

"Old gastrointestinal drug slows aging, McGill researchers say"

"Turning back the CLK on neurodegeneration"

"Green tea catechins as brain-permeable, non toxic iron chelators to iron out iron from the brain" (summary)

Good luck!

Sorry, I just see people responded to my post. They now don't think he has MS but no one seems to know what is going on. They supposedly checked his B12 as well and it was fine. Spinal tap was okay except for a slight scare that he had meningitis and then insisting the tested was wrong. He is seeing a good nuerologist who sees mostly MS patients and she put him through a bettery of tests. His MRI did have something wrong on it but it wasn't quite normal for MS lesions. She said she didn't think it was iron on the MRI. I though you could see the iron on MRIs. Maybe I'm wrong.

He is trying to get his family to do testing as well. The strange thing is when I met my husband he told me the doctors thought his mom might have MS and she has many of the symptoms he has to a lesser degree. The passing out, falling down the stairs, throwing up, possible seizures, joint pain, osteopososis. Yet, she has always said her iron is low. Can you have low iron and high ferritin?

He's down to around 1000 ferritin from 1800. I guess it's an improvement since he hasn't been in the hospital in a few months.

Stepha62 --- What is your blog? I'd like to read it.

I was diagnosed today as HH Type 4. I also have Relapsing remitting MS. I don't have high iron levels but very high ferritin and so they did venesection for the first time today (lucky no waiting). I have been doing Google searches on possible HH/MS link. My consultant was not aware of any. But the type I have is quite rare and new apparantly (how thrilling :-/ )

Stepha62 I have had lower B12 as well and optic neuritis. My lumbar puncture however showed the antibodies that conclusively diagnosed me with MS. We seem to have interesting similarities (not saying you have it, just that with HH and MS type symptoms in common + B12 deficiency its just interesting). My MS symptoms were dormant for some time. MS got more aggressive for me around the time when these super high ferritin results were showing up. I have no idea if there is a connection, just relaying what I've experienced.

I am 37 with Hereditary Hemachromotosis. I experienced the classic heart problems but got lucky and was diagnosed in my late 20's. My blood sugar had been creeping up any I was just diagnosed type 2 diabetic. I am experiencing some MS signs but have no official diagnosis nor have I had tests done. I am frequently dizzy off and on feeling off balance and fight chronic fatigue. I always feel tired no matter how much sleep I get. Recently I have experienced my legs feeling heavy and almost feel like I can't control them sometimes. Still walk fine, but have swelling in my legs and ankles every night. Also diagnosed with Early stage congestive heart failure and take medicine for that as well as an oral medicine for being diabetic.
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