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Extremely Unusual Symptoms without diagnosis?
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Extremely Unusual Symptoms without diagnosis?

Since 2010, I have suffered an extremely large amount of symptoms including:

Numbness across my chest, in my left arm, left side of fact, legs, back etc...
Neck Pain
Headaches
Dizziness
Feeling of being in a dream
Feeling of being drunk when completely sober
Depersonalization
Feelings of panic
Heart Palpitations
Chest Pains

I have had neck X-rays, neck MRI's Head MRI's, chest xrays, heart ultrasounds, ECGs, completely full blood tests while fasting to exclude diabetes, blood pressure checks, 24 hour heart scans and more.

No doctor has been able to tell me what is wrong, despite being sent to Orthopedics, Neurologists, multiple GPs, Accident and Emergency departments and more.

My most recent blood tests were completely fine, apart from apparently a single one of my liver enzymes was not functioning correctly, but my doctor said some people are born with this and it wouldn't be causing any of my symptoms.

The symptoms get better and worse at different times, and seem to be made worse by stress.

My main question is, could this be anxiety? I am 18 years of age, and surely if this thing was deadly it would have killed me after being untreated for 3 years and counting?

I am booked for a refferal now to an ENT specialist to do more tests.

If it helps I am male, 18 years of age, weighing 10.3 Stones, standing approximately 5.5ft tall. I have had nearly every test known to man, Is this anxiety, or could the doctors have missed something after 3 years of extensive testing and diagnosing?
5 Comments
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4173379_tn?1355360151
Hi there, I am scanning this site based on a recent diagnosis my husband just received last month of Hereditary Hemochromatosis. It is where the body does not get rid of excess iron, but stores it, and in the body over time it is toxic, leading to organ, tissue and joint damage. It loads onto brain, liver, heart, pancreas, to mention only a few.

The strange side of it is that you have mentioned you have every test under the sun and nothing is coming up, however, every test under the sun does not include in many cases, a screen for iron loading. Docs are missing this. And with your elevation in liver enzyme for no other reason, it is a red flag to get your iron checked. Elevated liver enzyme can be caused by many things, and often resolves itself, but if it continues to rise and stay elevated it is a sign of systemic illness and liver damage. Not to be ignored in any case.

Being as how you are young, these symptoms are just like reading my husbands list...he is 57 but has been not well for many years, and all tests related to heart, and every other function have always come back within normal range. However, silently he has been storing iron and now has liver damage and pancreatic damage due to iron overload.

In a genetic situation, if a person is found to have the mutation of the HFE gene and carry two mutated copies of the C282Y they load iron very fast, and if there are other health issues, immunity, diet, lots of red meat etc, iron supplements, breakfast cereals, everything is fortified these days, then a person will load iron very quickly with no way of the body ridding it. Males will do so faster than females because they have monthly periods so get rid of some blood every month which is the only way to get rid of excess iron.

My husband gets weekly phlebotomy in which they take a pint of blood. His levels are coming down, but he was Irish, and he got it from one or both of his parents. His dad is dead at 72 of congestive heart failure, had colon cancer and body pain and fatigue his whole life. OF course no one out anything together. His mom exhibits signs as well, and is in the process of being tested. But he has the two copies of C282Y and H63D which he will not store iron as severely as someone with a double copy of C282Y.

Worth checking into...be warned docs don`t like this much being asked to test for iron overload, they say we looked at your iron and it is fine...this screen is different and not routine testing. Many times this is found out by accident.

Anyway, based on all I`ve come to know in the last few weeks, and your symptoms, it is wise to catch this early on if indeed you are iron loading. Before damage is done you can`t reverse.

Good health best wishes...
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1978102_tn?1334247367
Thanks very much for your answer, can I ask if your husband also had a very high appetite for food and drink? I find myself unable to stop drinking or eating sometimes, and I originally thought it could be diabetes until I was tested and they said it was not.

I also get the feeling of being in a dream, like Im drunk when im not?

Regards,
Jay
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4173379_tn?1355360151
Hi there...yes, I always said I couldn't believe he was the shape he was in and not 300 lbs. with all the snacking and eating, but that appetite changed over the last while and he has lost a lot of appetite, but still has high carving for sweets like chocolate, and likes to snack.

A person with iron overload over time has damage done to pancreas and can be pre-diabetic for years before actually becoming diabetic and have many symptoms, for eg. before we knew anything about this iron thing, he began to lose vision, went to specialist and was diagnosed with a rare eye condition that is normally only found in people with diabetes, yet he does not have diabetes. But we have found out that he has nodules on his pancreas as well, so he could very well end up diabetic from this as well. More and more problems are continuing to show up. Gallbladder, liver, numb fingers, joint pain to the severe, fatigue to the extreme...hopefully getting the iron out will help resolve some and slow the progression of others. But early detection is so important, and I am struggling myself with finding out my iron levels are abnormal and high, except for one, which happens to fall within the "normal" range and unfortunately the dr.s often choose to only look at this one number and not the whole iron picture. Getting one who takes your concerns seriously is a monumental challenge.

Keep in touch, and if you have any other questions, let me know. I'm always checking in and sharing our personal stories. It is a journey...

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4173379_tn?1355360151
I should also say that phlebotomy is not the only way to rid body of excess iron, there are chelation drugs that can do that but not as effective, and used in people who have low hemoglobin and can't tolerate the bloodletting well.

I also read it back to myself and saw that it kinda looks like men load faster than women because they have periods, not the men but the women,, lol. I get  typing and write it as I think it sometimes. Hope it makes sense somehow. I also assumed your liver enzyme was elevated, not saying it is, but that is usually what happens when there is liver damage or systemic disease or alcohol related, etc. When they continue to elevate and not resolve this is red flag. Regardless of reason.

Take care, cheers.
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995833_tn?1375604252
Somatoform autonomic dysfunction, known as Da costa's syndrome is my impression.
Do not worry, you would do fine sooner.
Cheers.
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