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What do you think about this permanent discoloration?
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What do you think about this permanent discoloration?

8381923?1349159065
Hi, I've been having this permanent discoloration and many other symptoms for more than two months. They were all triggered after overexercising. Doctors seem to focus on my other symptoms but not on the color of my fingernails. Before their colour was like that of normal, healthy people's fingernails. Also my lips, tongue, scars, scratches eg my face after shaving have this same discoloration. Please tell me all the causes of the discoloration. I'll attach more pics here. Thanks in advance.

http://i.imgur.com/R6g8D.jpg
http://i.imgur.com/d8VwM.jpg
http://i.imgur.com/Y9Yxa.jpg
http://i.imgur.com/ZkoOM.jpg
32 Comments
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Avatar_f_tn
your heart has changed u put a stess in you your heart may have dropped a little in your chest its no big deal id just start with getting more potasium in your regamine and work up to adding iodine supplements they are bringing back my natural colour on my nails and put good coluor into my face my boyfriend asked me what i had been doing differently 50mg daily it works with every facite of every part of your body has a place for iodine  to be used in it if that doesnt tell you how important iodine is in healing a body i dont know what will 'look up iodide or kelp cheer up
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2143641_tn?1396681743
I can't even see any discoloration? there seems to be nothing wrong with your hands. where exactly do you think the problem is?
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Avatar_n_tn
Hi, thanks for your answers. On July 14th, after going running, my hands fingernails turned purplish/bluish and stayed that way. Before that day, they looked normal pink. A week later, I started getting a lot of symptoms which last until today and won't let me go on with my life normally. If you check the pictures, you'll see that bluish colour.
I recently found out that I have almost no vitamin B12 in my blood. Doctor says it's probably a malabsorption problem and referred me to hematologist, gastroenterologist and neurologist. Do you think the fingernail discoloration has anything to do with the megaloblastic anemia I'm suffering from?
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2143641_tn?1396681743
I don't know.. I read that Megaloblastic anemia is caused by B12 deficiency.

the different colour in peripheral blood can in fact be given by poor oxygenation. therefore I guess it's possible it is linked to anemia.

which are your other symptoms? your CBC values? how long have you been found with anemia and was it coincidental with the symptoms?

another specialist you should see as a precaution is the Cardiologist, do a EKG, Echo. and cardiac stress test.

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Avatar_n_tn
well I have a lot of symptoms... including dizziness, lightheadedness, chronic headaches, fatigue, muscle numbness and twitching, weakness, numbness, brain fog, apathy among other things,

I had all the tests you mention and many others including CT, MRI, spirometry, xray, all of them were normal. I also got tested for EBV, mono, HIV, coaxackie, and others, all negative. Only MRI showed chronic sinusitis. An ENT wanted to treat it with corticosteroids, but I rejected the treatment. I had immunology tests like ana, anti sjogren, scleroderma, lupus and others, negative. Also low sed rate. Only my c3 was low, which as far as I'm concerned has to do with malnutrition. My last CBC was done in august, showing no abnormalities. It was not until september 14th that my blood was drawn to check for vitamins and minerals. Ten days ago I got the results and took them to my doctor who referred me to a hematologist who I'm seeing next thursday to treat the anemia.

I think all of my symptoms coincide with the megaloblastic anemia, but I found no explanation about the chronic fingernail discoloration. I agree with you that it's linked to anemia. And I hope so, because I found no resources in internet which talk about chronic fingernail discoloration like mine.
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2143641_tn?1396681743
anemia cannot explain all your symptoms. there is something neurological going on, something disturbing the central nervous system.

I've been collecting similar cases over the past few months, I suspect that they have something to do with a Influenza A viral pandemic that would trigger a autoimmune reaction of some sort.. autoimmune encephalitis.

what is C3 exactly? you mean the Complements System? how is that related with nutrition?

I had all of your symptoms and 10-20% paralysis in the legs, the only thing they found was high C3.

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Avatar_n_tn
I think actually anemia can explain my symptoms. I'll see after the treatment. I heard of similar cases (with no discoloration). Megaloblastic or Pernicious anemia (what I probably have, a gastroenterologist is going to check it) can make CNS disturbances. Or at least it can according to the source I read:
http://www.freemd.com/pernicious-anemia/symptoms.htm
http://www.freemd.com/megaloblastic-anemia/symptoms.htm
And yes, I meant the complement system. According to medline, decreased complement activity may be seen in infections, autoimmune, malnutrition and other stuffs:
http://www.nlm.nih.gov/medlineplus/ency/article/003539.htm
Can you explain a bit more about your Influenza A theory? Was that what you suffered from when you had these symptoms?
Also, you're from Italy right? Do you know about the incidence of Lyme disease in Rome and Venice? I also consider that possibility since I might have been exposed there and in other places in Europe.
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2143641_tn?1396681743
Borrelia is almost non existent in Italy. in some endemic areas Ticks carry rickettsia or meningitis I believe but not Borrelia. there is record of some cases of Lyme in the far north near the Alps.

did you go to the countryside and were bit by a tick?

You see since you are sick, you aren't very lucid because your CNS is affected, you are inexperienced, you will rush into labelling your illness with one condition or another, even "stretching" the diagnostic requirements when the realistically it is not plausible.

when were you in Rome exactly? I got what I believe was a almost asymptomatic flu in September 2011. weakness in the legs followed to a week-long headache, diarrhoea, mild paralysis to the right side of the face. watery nasal drip. (sinusitis)


your symptoms and low C3 all points to Autoimmune of some sort.  that doesn't necessarily mean that you are irreversibly ill, it could be something that will regress spontaneously.




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Avatar_n_tn
I was in Rome and Venice in September 2011 actually. I'm not trying to label my disease, I'm just trying to point out to what can be real, instead of trusting on doctors and letting them be the owners of truth. Despite all, it's my health what is wrong not theirs. They were not even able to find out what was wrong with me, it was me who demanded to get tested for B12 levels.

You'll see, Lyme disease is a very complex disease and it cannot be closed on being on the countryside, or more specifically on being bitten by a tick. Most people with lyme never had one single rash or were significantly to the countryside, and they don't even remember a tick bite. But actually I was on the countryside last year all around Europe. I've been a lot to the woods in Norway, a really lot, and I've been to the countryside in Italy, Spain, England and many other countries. Poor did I know about lyme as to act with caution for it. That's why I can't rule it out.

But you know, actually my doctor believes I need a neuropsychiatrist, so he's referring me to one as soon as the anemia is resolved. The stress I suffered from throughout all this process of finding out the cause for my disease really shattered my mind. It really did.

How did you recover of your illness? Did you get a treatment?

How do you think a low C3 and my symptoms necessarily point to autoimmune? My rheumatologist already ruled out many autoimmune diseases, perhaps I should get a second opinion?
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2143641_tn?1396681743
I know what you're trying to do because I have been through the same. when I got sick and I realised that going to doctors was pretty much like going to the clowns show I started studying the matter and exploring all different possibilities.

direct infections of the CNS: lyme, meningitis, syphilis, malaria, rabies, etc.
autoimmune: multiple sclerosis, ALS, Lupus, etc. etc.
orthopedic, spinal disc herniations (I didn't realised cognitive symptoms and the rest were related)

and so on.

by being stressed, inexperienced, literally dumbed down by your sickness, you will tend to make fit what really can't fit. Note that it is a common error in medicine that concerns Doctors as well as patients.

that's why if you look up a certain disease on the internet you will always find someone who says it can cause this and that, almost everything.

you post your symptoms in the Lyme community, they will tell you have Lyme all the way. doesn't matter there was no tick, no rash, no fever, negative tests, Lyme is rare etc. it's only a irrational process by which people try to find a explanation to the unexplained.

The need for diagnosis is not only because people seek treatment but also because when sickness is unexplained most Doctors will rush you to the psych ward. you understand is that the alternative is that they would have to admit they don't know how to do their job, which is a horrible prospective to their narrow minds.

In conclusion I can suggest a few things to you:

most likely you don't have a direct infection of the CNS or else you'd be really messed up with fever etc.

Keep it in general concepts, medicine is a lot behind on these type of issues. your problem is probably a "autoimmune reaction". the way doctors diagnose those conditions is empiric, MS, ALS, Lupus, Rheumatoid Arthritis etc. are only labels for a collection of symptoms and some clinical evidence that they often bend the way it pleases them, for something that basically they barely understand.

Most of all: DO NOT go to a shrink. Change doctor, go to a different one. talk to different doctors and pick one who can give you a reasonable answer which might include one like "I don't have a clue". It is normal to be stressed and scared by illness, moreover something is disturbing your cognitive functions, slowing them down, therefore you need to slow down a bit too.

The fact that you were in Rome in Sept. 2011 is a impressive coincidence.

look up things like "post viral syndrome" "post viral autoimmune encephalitis"

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Avatar_n_tn
ok, and the discoloration points to autoimmune as well?
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2143641_tn?1396681743
I don't know about that. you could have more than one condition at once.  or it could be secondary to one of the symptoms. it's only a bit of colour when you squeeze your fingers you can barely notice it
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Avatar_n_tn
Hi again mate, I'm just here to tell you that you were wrong about the "autoimmune reaction". I sought second, third opinions about my symptoms, and in fact, B12 deficiency was able to explain everything, according to doctors and my research. CBC values and Complement System returned to normal values after B12 supplementation. It's been a month since I started on it, and most of my symptoms subsided. The rest is getting less noticeable everyday. I think my cognitive abilities are not yet at 100% percent, but are really a lot better than before. Though it's very difficult, it's not impossible to study as it was before. Docs said that it might take some time to be back 100% ok since there has been neurological involvement, but luckily my chances of full recovery are optimal as I haven't been suffering of the symptoms much time before supplementation.

The cause of my B12 deficiency was H Pylori, and it was treated. There's still even more to fix. I found that my Vitamin D level is very low. Also my zinc level is normal low. I'll see what I fix after treating that. But I'm very glad not to have an autoimmune reaction as you said.

What doesn't seem to be fixed is my fingernail discolouration, so I was referred to a vascular surgeon to get checked. On internet, I found cases of hyperpigmentation on fingernails due to B12 deficiency very similar to mine, which resolved two or three months upon supplementation. Luckily that will be my case as well.
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2143641_tn?1396681743
Interesting, I didn't know that H Pylori was linked with B12 deficiency. were you actually tested for H Pylori?

out of the millions of people with H Pylori how many do you think will have your symptoms?

You haven't really ruled out something like "post viral auto-immune reaction".
Consider that most autoimmune syndromes can't really be diagnosed with a definitive lab test.

I haven't been tested for B12 deficiency, my C3 hasn't been checked again but I figure it would be back to normal now that the symptoms are regressing. at the moment I don't even have access to doctors. Consider that I seem to be healing spontaneously: if I had been given just any treatment, vitamins, iron, magnesium, psychotropic drugs, anything, now I'd be addressing the improvement to whatever I had been taking.  

I actually heard of a woman from my area the other day who has colouration on her hands she was told it's Raynaud's disease.

there is always the possibility that low B12 was not the origin of the problem but rather a sign of it or a consequence. the same problem that altered C3 values. Doctors always have it figured out...

even provided that it was only due to a (sudden) vitamin deficiency that would mean that these other facts:

-you being in Rome the same month I began to get sick
-compatible symptoms
-alteration of the C3 (high for me, low for you)

were all mere coincidences.




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Avatar_n_tn
Yes, I was tested. My GI doctor prescribed an endoscopy with biopsies of stomach and duodenum. The results came back as chronic congestive gastritis and H Pylori positive. It was treated with triple therapy (lanzoprazole+amoxicillin+clarithromycin).

Well, it is true that not most people with H Pylori will have my symptoms, for nor all them get B12 deficient. It is quite obvious that bacterias will have a different impact on different human bodies. Indeed, many people got B12 deficient because of H Pylori but were successfully treated and stopped B12 deficiency before they were suffering any symptom of it. Also many people got B12 deficient, suffered symptoms, were treated and still didn't find out that H Pylori is the cause. It is possible, isn't it? At least it is according to my research.

What if you would ask how many people with B12 deficiency suffered my symptoms?. People with 50 or 100 pg/ml of B12 suffered of paralysis, irreversible dementia, irreversible neurological damage... Whatever. My level was 12 pg/ml. Why didn't I get dementia, get crippled or even die then?

You say that I haven't ruled out a "post viral autoimmune reaction". It is true that there's no single test to rule in or out this. But it's also true that most people with autoimmune disorders will have a positive ANA. Why would I insist on it when I had repeated negative ANA tests? Also, I sought another rheumatologists' opinions, who tested both lab an clinical evidence. They all say that I don't have an autoimmune disorder. So why should I insist on having autoimmunity?

I believe Complement C3 means nothing. At least not necessarily autoimmunity, not in my case and not in yours either. If you search, for example here (or in other sites too, of course): w w w. nlm .nih .gov/medlineplus/ency/article/003539.htm
you can see the context in which decreased complement activity is seen. These are the following:

*Bacterial infections (especially Neisseria)
*Cirrhosis
*Glomerulonephritis
*Hepatitis
*Hereditary angioedema
*Kidney transplant rejection
*Lupus nephritis
*Malnutrition
*Systemic lupus erythematosus

If you see, Malnutrition is listed. Why wouldn't I have been malnourished? I had B12 deficiency, have Vit D deficiency, zinc, and probably many other. If I correct the malnutrition, wouldn't it mean that if my values came back to normal, then the abnormality was caused indeed by malnutrition?

You say you haven't taken any medication and healed spontaneously. So that definitely points to an autoimmune disorder with "spontaneous regression"? Not to me. In fact, I believe many medical conditions can regress spontaneously. See the example of B12 deficiency. If you google, you will see what I'm talking about. There have been people with all my symptoms and paralysis in the legs. It regressed spontaneously. Years later, they got sick again. Got tested and it was B12 deficiency. You don't have to be vegetarian, vegan, lack intrinsic factor or whatever to be deficient. All people of all ages can be affected.

As for the discolouration, Raynaud's was totally ruled out on me. I got a cold test for Raynaud's. Plus, internet and docs say that Raynaud's doesn't cause permanent discolouration. Honestly, I still don't know what to think of it, as I've found very little evidence on the internet (yet, it's still evidence) of hyperpigmentation due to B12 deficiency. We'll see soon.

And yes, of course there's a possibility that low B12 was not the origin of the problem. But at least it's 99% probable I guess. The facts I have are the following:

*Homocysteine is a protein which is regulated with the help of B12.
*I had H Pylori, lacking of B12.
*Intense exercise elevates homocysteine.
*My symptoms were triggered after overexercising.

So my theory is the following:
I was already B12 deficient by H Pylori but yet asymptomatic. I overexercised and elevated homocysteine, thus needed more B12, so wasted the last stocks of B12 in my body to regulate it... And got symptomatic. In that way, it all would be due to a sudden vitamin deficiency.

The facts you mention were not mere coincidences, indeed they don't share nothing coincidental:

-I was in Rome the same month you began to get sick (you began to get sick, I didn't)
-Alteration of the C3 (mine was low, yours was high, high and low complement mean different things)
-Compatible symptoms (ok, how many diseases have compatible symptoms... I didn't have paralysis by the way)

It all sounds very similar to what you said about going to the Lyme forum. They experienced Lyme, so they'll say I have Lyme. Then I come here and you (believe you) had an autoimmune reaction, and you will say I have an autoimmune reaction too... And I was B12 deficient, I'll tell you and other people to check their B12 levels... A neverending circle.

Well, that was a long answer... There you have my opinion mate. Regards
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2143641_tn?1396681743
you did a good research but don't forget that you were thinking you had Lyme and now you found something that fits better, at least you think it does with what you know so far. It is typical when getting ill the first time and starting to research to rush to conclusions and be overenthusiastic about them.

Before I began to research on a viral pandemic I looked up everything that could have been even distantly related with weakness in the legs:

Multiple Sclerosis, AIDS, Rabies, Syphilis, Lyme, Rickettsia, Brain tumor, ALS, B12 deficiency, shiga-toxins, e.coli, myositis, myastenia gravis, Lambert-Eaton syndrome. etc. etc.

finally I came up with Guillain-Barrè syndrome because my mother got the same strain of virus and developed tunnel vision which I assumed it was the variant of a G-B: Miller Fishe syndrome...

all her tests were negative except the Romberg's test and therefore compatible with my hypothesis. she seems to be recovering her sight too.

I haven't been diagnosed with anything, only a doctor had supposed MS but it was then ruled out after a negative MRI and then they just dumped me.

Note that there is no doubt whatsoever that my problem began with an infection, I'm guessing viral. I have all the details because coincidentally I had been keeping a journal.

I know I began to get sick in September when I got some sort of Sinusitis. I had mild weakness in the legs in October but only in the second half of December the legs really began to give out when walking down the stairs.

I only checked these annotations after I realised it could have been a "flu". I would have never remembered them otherwise, you wouldn't believe what people forget. If you had any mild flu/sinusitis symptoms you could have forgotten about them, easily.

There is more, practically everyone around here got sick with "cognitive" symptoms but only a few had mild weakness in the limbs. Our neighbour dropped dead for apparently no reason and I've heard of other deaths in the area. Even all our cats were affected.  

When I began to check this forum I found out there were people everywhere with compatible symptoms. even their locations seemed to follow a path of large urban areas / airports.

So I can't really be sure it's "autoimmune" , I don't know enough about the subject, but the other option is a direct viral infection of the CNS and ADEM (Acute Disseminated Encephalitis)

There is actually also something called Autoimmune Encephalitis.

So I didn't say you had a Autoimmune reaction but I said it's possible. I said that you were not crazy and you didn't have Lyme. The same way I'm saying H Pylori might have contributed into challenging your immune system but it is not the origin of the problem.

B12 deficiency can't appear all of a sudden and any ways you would develop symptoms, especially cognitive symptoms, only after years and years of malnourishment.

while you have millions of people with H Pylori who have none of your symptoms you'll find similarities in most people I found recently that have fallen ill often after cold-flu symptoms , sinusitis or UTI and are yet undiagnosed , all tests negative.

If you browsed all my posts you would find many.  
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4173379_tn?1355360151
Interesting reading...there are a lot of things discussed and research done, I notice that nothing was said about iron testing...this is a toxic metal and in excess amounts in the body produces many diseases and symptoms that do damage neurologically, to organs, tissues and joints.

Docs may tell someone they are anemic or iron deficient, and point to mineral deficiency and vitamins, and never test further past CBC's and RBC as a patient does not always present with the "classic" symptoms of iron overload, as in the case of hemochromatosis. It is the most common genetic disorder among European background and is spreading to other populations, Irish and Scot, but Australia has high prevalence...1 in 9 are carriers of one or more mutated genes that cause iron overload.

In HHC (Hereditary Hemochromatosis) or other like iron overload diseases and conditions, excess iron is a major culprit in the development of common disorders we've come to know as fibromyalgia, lupus, IBS, MS, Alzheimer's. Parkinson's, and predominantly it causes liver disease, diabetes, heart failure.

Nail discoloration and ridges vertical and horizontal, skin rashes and lesions, thyroid malfunction...all manifestations with links to high or even moderate iron overload.

You all seem to enjoy your research into what ails you...this one will keep you busy for a while  ;)   ;)

Cheers...
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2143641_tn?1396681743
possible connections between Iron levels and MS are currently being tested in Italy by Dr. Zamboni with vascular surgery on a approved clinical trial.
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4173379_tn?1355360151
Interesting you mention that...what you didn't hear in the news about his breakthroughs is that he cured his wife of MS by removing her iron...

This is documented and I have the site for this if interested...as I cannot post links, I have been told.
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2143641_tn?1396681743
of course I know his story if I mentioned it... that is why he had official approval for clinical trial. we'll see.
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Avatar_n_tn
Mate, of course I found something that fits better. I have clinical evidence of it, I had tests.

So you think your conlusion is now more accurate simply because you've been reading into AIDS, Lyme, ALS and other things. And now you have this "autoimmune reaction" theory. But what evidence do you have to state this more than yourself and your cats? You've also twisted everything in a way that looks more reasonable to you. Just wondering, have you been checked by a psychiatrist? I'm not saying you are crazy either, but maybe you have an OCD, who knows.

Your neighbour died and other people died. Well, how can you be aware of the reason these people died? People die there, here, everywhere, and death can show in a lot of ways, there doesn't necessarily have to be a warning. But you have your theory, so you see a person die in your environment, and within the context of that theory, you make it fit well.

You have a negative MRI showing no MS, good for you, but what other tests did you have? There is much more to test before getting to find a conclusion yourself.

I am not saying that a relation between your legs and a flu is impossible, it would be only considering this autoimmune theory. But how possible is that? I think it's one of the least possible conclusions. I think doctors would search and insist first on a disease not related to your flu.

Just wondering, have you noted that a post-infectious encephalitis is a medical emergency? Don't you think doctors would have considered this in your case?

Besides, I read the statistics of ADEM, and I can quote this text:
"The incidence rate is about 8 per 1,000,000 people per year. Although it occurs in all ages, most reported cases are in children and adolescents, with the average age around 5 to 8 years old"
Don't you think these statistics show that it's virtually impossible that you and your neighbour and practically everyone about there with cognitive symptoms as you say have ADEM? And what evidence do you have to state that everyone around there got sick with cognitive symptoms? Did they tell it to you? Did you make a neuropsychiatric examination of these people?

You state again that H Pylori wasn't the origin of my symptoms and again, what evidence do you have to state this? Millions of people with H Pylori don't have my symptoms, because the bacteria doesn't produce B12 deficiency in everyone, and besides B12 deficiency doesn't manifest on the same way in everyone.

You also state that B12 defiency can't develop suddenly. And what evidence do you have to say this? Also, who said mine developed suddenly? I've had anxiety and concentration problems all this year, prior to overexercising.

You show me evidence and I will consider your theory. If you want, of course, because it's obviously not important to you whether I agree with your theory or not.
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2143641_tn?1396681743
if you're happy believing what the doctor told you it's not my problem boy I'm not your dad.
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4173379_tn?1355360151
Well of course I know you are familiar with the story, never suggested otherwise, I agree with your reference to the research of Dr. Zamboni, and much more has to be learned, but aside from the surgery for Liberation Vein Therapy, as it is called, is the fact that the iron that has loaded on the brain due to vascular blockages is now able to drain and be removed, so it's not as much the blockage being removed as it is the relationship between iron load on the brain and neurological disorder and disease. That was my point, is that it is such a "simple" approach, and the only ones fighting his research and findings are the Big Pharma and his most outspoken critics are the ones who have a vested financial interest in keeping this quiet. Billions of dollars a year are spent on treatment of MS...if a person is diagnosed with iron overload, they are treated with phlebotomy...removal of blood=removal of iron=resolution of many symptoms and prevention of disease. No money in it for docs and pharma...

MS is not the only neurological disorder associated with iron overload...Alzheimers, Parkinson's, depression, mood disorders...to name a few. There are many others.

I have a fascination with the latest findings in this field and learning more in the quest for our own answers to our health problems we have been diagnosed with recently, as we learn just how this little known or recognized disease of iron overload affects us mind and body.
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2143641_tn?1396681743
I don't know but I guess that Zamboni's research won't lead to a treatment for MS.  
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4173379_tn?1355360151
For the sake of all the MS sufferers out there, I hope you're wrong...

So far his evidence and treatment success in the patients he has done this on has been exceptional. If I had MS, I'd be filled with hope this may one day be standard procedure. Medical community sometimes slow to adopt or accept revolutionary concepts, depending on which side of the table you sit...

I'll be following this closely. I know some people in Canada have been getting sent for and approved for this treatment so it will be interesting to see how it all turns out.

In the meantime, it is very preventative to look at our own iron levels and make sure we are not in the iron overload category, and get tested at least once in our life for any signs. Can't hurt us to know. Will hurt us not to, though...

Cheers
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2143641_tn?1396681743
maybe it has something to do with Iron levels and the magnetic field of the Earth. that would kind of fit with MS being predominantly in regions within a certain distance to the Poles
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Avatar_n_tn
then thanks for all the suggestions you gave me, boy. I never suggested you were my dad and never would, boy.
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Avatar_n_tn
panda, it's only now that I've paid attention to your posts. That's about iron overload is a pretty good suggestion. I'll research about it. I'm not sure If I've had an iron panel these last months, I'll see. Maybe it was one of those tests which doctors didn't really pay attention and I was just happy to hear from them that everything was ok.
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4173379_tn?1355360151
You are entitled to get copies of all your medical records/tests and then you can research the findings and be informed for yourself. I myself just had a letter from the dr who had been involved in this diagnosis for my husband after which she ordered the iron tests for me as well (this dr. did not diagnose him, merely got the test results from internist) and she wrote me a letter telling me I was fine and in spite of some iron elevation she saw no evidence...I rushed down to my new drs office who also received the blood tests and got copies, and boy was I surprised!!! I have been iron loading, and due to my age, sex, it is not severe yet, but I am close to the same levels my husband was when he was diagnosed...he is receiving treatment. I have had many of the symptoms over my life and still, and my family history on my mom and dad's sides are noteworthy. No one connects the dots until someone is actually diagnosed and then someone else's death or illnesses in the family make sense. It can lead to lifesaving diagnosis for other members of the family like siblings who found out only by another sibling being diagnosed.

So not always beneficial for a patient to just take your dr.s word for it. Get your results and research. And you know what they have tested you for versus what you need to or want to be tested for.

Take care...
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Avatar_n_tn
Hi panda, thanks for your answer. I found out I did have some iron tests:

Iron: 92 ug/dl
Ferritin: 397 ng/ml

Do you think they are significant? I was told my ferritin was high, but that we should wait and recheck it later, because it could be related to B12 deficiency.

That you said is a good advice. I'm happy not to have taken my doctors' word as the final word of my undiagnosed disease. Otherwise I wouldn't have found out my severe B12 deficiency. I'm glad to have demanded that testing.
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4173379_tn?1355360151
Yes that is significant. DON'T let your dr. tell you to wait....ferritin at the high end for males should never be over 300, optimal during treatment is less than 100 and during maintenance once the iron levels normalize you never go above 75 before receiving a phlebotomy to bring the levels down again. Your iron is also very high. Anything about transferrin saturation? That will be a percentage level, and should never be over 45-50% or so, and less during maintenance. If you are over 50%, male, and your ferritin is that high, you can be assured you have iron overload. Your age? Can't remember. If you have caught this young, and only at 397 so far, you will have symptoms but damage will be limited. But diagnosis and treatment is vital!!!!

Take care, I am so curious about your other tests they think they need to wait for...genetic? Or other? Or they didn't tell you?
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4173379_tn?1355360151
Just a side note, ferritin is also an acute phase reaction, and can be elevated in other diseases and have other causes as well...you need to get your transferrin saturation level and the whole iron picture will come out.

Anemia or iron deficiency can come from extreme exercise and diet regemine and cause same symptoms as too mush iron. Ferritin is a place to start but only small part, and you'll know more about iron storage once you find out your TSAT%. The iron level you gave me at 92 was in ug/dl and that seems to be within normal range, as far as I can tell, but I am used to reading it in umol/l....not a dr... hopefully yours can interpret your readings and give you some more answers.

Your ferritin is high, if along with elevated TSAT over or near 50%, you need to investigate for iron overload, if not, then you can check into the anemia aspect or iron deficiency. Just rule out the source of the anemia before taking any treatment that adds iron to your diet with supplements as directed by dr. A person can be anemic and be iron loading. This is complicated...wink. Have "fun" getting to the bottom of it...that's most important.
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