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Undiagnosed Autoimmune Disease
Hello I am a 19 year old female who has suffered for sinus problems and chronic fatigue for 2 years, also including headaches dry eyes and blocked ears and pressure. 6 months ago my symptoms have spread to my whole body. Nerve electric like pain everywhere, numb hands and feet, joint pain, spine pain, pins and needles, my sinus and ear pressure has also gotten worse. I have a positive ANA test of 2560. I have inflammation in my blood and low iron levels. All my other tests were 'normal'. Lupus, MS, Rhumatoid Arthriis and Throid problems have all been ruled out. Does anyone what know this could be? Or know of any rare autoimmune diseases I should be tested for with my symtoms? Thanks I am desperate for answers!
Hey guys just adding an extra symptom I noticed today, i lyed down on my couch this afternoon and after not even 2 minutes I noticed I had severe back pain and nerve pain on both sides-lower/middle back on either sides of the spine all over to the sides. Does anyone know what this could be from? I tried standing up and the pain disappeared. Later today I tried lying on my stomach again and the same thing happened! I have never been one to sleep on my stomach so I guess I wouldn't of known. Thanks.
Wow thats amazing!
Yes I most certainly will get these iron overload tests done ASAP and keep everyone posted with my results!
I have the right heritage for it so it could very well be a possibility!
Thank-you so much for you interest and support
It is nice to know that I am not alone with these crazy and life consuming symptoms!
Yes I most certainly will get these iron overload tests done ASAP and keep everyone posted with my results!
I have the right heritage for it so it could very well be a possibility!
Thank-you so much for you interest and support
It is nice to know that I am not alone with these crazy and life consuming symptoms!
Hello there,
Yes I had considered Lyme being a possibility and just finally got a blood test for it from my GP the other day, So when i get my results back next week I will keep you posted. I know Lymes disease has been hushed down a lot that it is non exisit and rare however from my research there has been cases in areas in the world where there 'shouldn't' be Lymes. Will be interesting to see.
Yes I could possibly have a deficency the doctors tested me on my vitamin B12 levels as that can cause nerve pain however my levels where normal.
Yes i most certainly will not give up until I find an answer. I need to get a proper diagnosis and treatment until I am better again so i can return to my normal life.
I am a pastry chef and my symptoms for the last 6 months have basically consumed my life and have not been able to cook so it has been quite difficult.
I am also getting an MRI on my spinal cord next week to rule out anything and will keep you's posted on my results!
I google things quite often related to my symptoms in search of an answer but there are just so many possibilites out there! I know they mentioned at one stage they thought I could have some form of mixed connective tissue disease however I have no problems with my skin luckily and never presented with the classical butterfly rash that you see with lupus patients.
Thanks for all your support and hopefully I will get an answer sooner rather than later. :)
Yes I had considered Lyme being a possibility and just finally got a blood test for it from my GP the other day, So when i get my results back next week I will keep you posted. I know Lymes disease has been hushed down a lot that it is non exisit and rare however from my research there has been cases in areas in the world where there 'shouldn't' be Lymes. Will be interesting to see.
Yes I could possibly have a deficency the doctors tested me on my vitamin B12 levels as that can cause nerve pain however my levels where normal.
Yes i most certainly will not give up until I find an answer. I need to get a proper diagnosis and treatment until I am better again so i can return to my normal life.
I am a pastry chef and my symptoms for the last 6 months have basically consumed my life and have not been able to cook so it has been quite difficult.
I am also getting an MRI on my spinal cord next week to rule out anything and will keep you's posted on my results!
I google things quite often related to my symptoms in search of an answer but there are just so many possibilites out there! I know they mentioned at one stage they thought I could have some form of mixed connective tissue disease however I have no problems with my skin luckily and never presented with the classical butterfly rash that you see with lupus patients.
Thanks for all your support and hopefully I will get an answer sooner rather than later. :)
Hello there, Thank-you I will certainly get my doctor to test me for an iron overload in my body, He is quite a good doctor and has a very open mind to things which is good. I have suffered iron deficency for quite some time so it could all very well be linked. Thank-you :)
Yes I believe also that steroids are not the way to go when I first started taking them it appeared to ease symptoms and I had a lot more energy however todayI have started to get worse again and nothing seems to get rid of the shooting nerve pain. I will definantly look into the treatment you are getting done, thank-you. :)
Perhaps you folks have heard about in the news the last while...Dr. Zamboni has made some incredible breakthroughs in the study and treatment of MS, and has cured his wife of this debilitating disease, first by coming across in his search for answers that excess iron damages blood vessels in the legs, so he began to think, what if that were true in other places in the body, that the vessels were blocked somehow, and so he investigated and sure enough, his wife's vessels in her neck responsible for transporting blood to brain were indeed blocked, which in turn had caused iron to build on her brain. He operated on her and unclogged the arteries in her neck, the blood ran freely again, and able to remove iron from her brain, relieved her symptoms, even brain lesions. SHe has had no attacks of MS for three years...he is treating others with this revolutionary and exciting method and patients experience relief of MS symptoms with extraordinary results.
Unfortunately, the greatest critics are the ones with vested financial interests...billions of dollars a year spent on MS treatments and research, Big Pharma makes billions on just this one disease, and if it can be cured or relieved in such a simple way in relation to iron levels and the crossover of blood/brain barrier, then it is a breakthrough of mammoth proportions with massive financial implications for Pharma.
An awesome topic to research...the link of iron overload to other common disorders and illness we all know the names of is evident and well-documented by iron studies and institutes that examine and research iron disorders, such as iron overload. The shocking part is how prevalent yet how rarely undiagnosed or misdiagnosed it is.
Keep asking, keep knocking, keep digging...as UnsureMS has said, don't give up. One of these things will click one day, as it did for us after 10 years and multiple incorrect diagnosis of other disorders that mimic the results of iron overload.
Unfortunately, the greatest critics are the ones with vested financial interests...billions of dollars a year spent on MS treatments and research, Big Pharma makes billions on just this one disease, and if it can be cured or relieved in such a simple way in relation to iron levels and the crossover of blood/brain barrier, then it is a breakthrough of mammoth proportions with massive financial implications for Pharma.
An awesome topic to research...the link of iron overload to other common disorders and illness we all know the names of is evident and well-documented by iron studies and institutes that examine and research iron disorders, such as iron overload. The shocking part is how prevalent yet how rarely undiagnosed or misdiagnosed it is.
Keep asking, keep knocking, keep digging...as UnsureMS has said, don't give up. One of these things will click one day, as it did for us after 10 years and multiple incorrect diagnosis of other disorders that mimic the results of iron overload.
All these are great ideas, have you tried googling. I know I have had many suggestions made to me about my sxs, but after some research I have decided I may have lymes.
Lymes from the research I have done can cuase alot of things. If you like outdoors, and hike alot it makes it even more likely. Also, just for your information it likes to mimic other disorders, such as MS and Lupus. I would research this as well.
Then there is also, many other deficiencies, and some one else will come along and suggest something else. The main thing I want to encourage you to do is not to give up.
Never give up on answers. If you need help researching I am willing to help you out. I have meant alot of people on here who have been through alot of things. Some have MS, others lymes, others a mix of disorders.
So, just PM if you need anything. Good luck, and I will be praying for you. May God Bless your journey.
Kimberly
Lymes from the research I have done can cuase alot of things. If you like outdoors, and hike alot it makes it even more likely. Also, just for your information it likes to mimic other disorders, such as MS and Lupus. I would research this as well.
Then there is also, many other deficiencies, and some one else will come along and suggest something else. The main thing I want to encourage you to do is not to give up.
Never give up on answers. If you need help researching I am willing to help you out. I have meant alot of people on here who have been through alot of things. Some have MS, others lymes, others a mix of disorders.
So, just PM if you need anything. Good luck, and I will be praying for you. May God Bless your journey.
Kimberly
Steroids can cause irreversible damage to the immune system in some cases. The treatment my dr uses is mostly supplements to replace missing enzymes and replete vit/mineral deficiencies and restore hormonal imbalance. That is the precise reason why most docs dont know about these treatments. They only want to prescribe medications.
I was 37 when I first started getting symptoms however looking back over my life I believe I was symptomatic since college.
I was 37 when I first started getting symptoms however looking back over my life I believe I was symptomatic since college.
Hi there...if your doc has done blood testing and has told you you have low iron, this possibly has to do with your tests coming back with a low hemoglobin and hematocrit count, and those tests are run routinely in the CBC's. Red Blood cells are also checked. A thing to be aware of is that those tests can indicate to docs if a person is anemic or be iron deficient they say, but a person can be BOTH anemic and iron load at the same time. When you ask the dr. about iron they say we checked your iron and you're low, so they don't want to look any further, but the tests you need are for the ones I mentioned in above post.
Some of the earliest symptoms of iron overload, even small elevations of iron, can cause many of the symptoms you have stated. Dizziness, headaches, fatigue, numbness or tingling in arms, chest pains and pressure, heart palpitations...as iron loads onto liver and heart first, you experience many odd symptoms that EKG's, ultra sounds, xrays, etc will not detect.
I have a lot of excellent info bookmarked and links if you would like to contact me...like you said it is worth ruling it out. I am in the middle of getting to the bottom of my tests, as it shows I have elevated iron, but I am in the early stages. I have had multiple issues since a young teenager, and into my 20's and dr.s never been able to pinpoint anything in spite of many tests, specialists...Women do not load as fast as men, as women have periods every month and give birth, and there are variations in each person, depends on why you are iron loading, if it is genetic, which mutations you carry, etc. Will take some digging and a willing dr. to take the time and be interested, especially if your tests or some of them come back within "normal" range they tend to lose interest. I am having this trouble. My husband was diagnosed, he is having weekly phlebotomy, just had fourth one done.
Early detection is paramount, as there are many damages that cannot be undone once it is done, like the thyroid, joints, and some organ damage.
Take care...
Some of the earliest symptoms of iron overload, even small elevations of iron, can cause many of the symptoms you have stated. Dizziness, headaches, fatigue, numbness or tingling in arms, chest pains and pressure, heart palpitations...as iron loads onto liver and heart first, you experience many odd symptoms that EKG's, ultra sounds, xrays, etc will not detect.
I have a lot of excellent info bookmarked and links if you would like to contact me...like you said it is worth ruling it out. I am in the middle of getting to the bottom of my tests, as it shows I have elevated iron, but I am in the early stages. I have had multiple issues since a young teenager, and into my 20's and dr.s never been able to pinpoint anything in spite of many tests, specialists...Women do not load as fast as men, as women have periods every month and give birth, and there are variations in each person, depends on why you are iron loading, if it is genetic, which mutations you carry, etc. Will take some digging and a willing dr. to take the time and be interested, especially if your tests or some of them come back within "normal" range they tend to lose interest. I am having this trouble. My husband was diagnosed, he is having weekly phlebotomy, just had fourth one done.
Early detection is paramount, as there are many damages that cannot be undone once it is done, like the thyroid, joints, and some organ damage.
Take care...
Yes they have ruled out fibromyalgia as my symptoms where more Central Nervous System based rather than chronic pain over my body, I also have dizziness when i stand up and loss of balance when standing.
Ok thank-you I will start to look into getting heavy metal testing done.
I know I have low iron levels so there could be something there thats linked.
I have half european/Irish and Scottish background! So it could be a possibility!
My main issue is my sinus/ears as that has been chronic for 2 years and just seems like everything has turned systemic now.
The only way now is for me to start eliminating causes until I can find an answer and get better! Thank-you for all your help :)
Does anyone know of any hormone related problems that can effect things like this as well? Perhaps I have a hormone imbalance, Thanks.
Ok thank-you I will start to look into getting heavy metal testing done.
I know I have low iron levels so there could be something there thats linked.
I have half european/Irish and Scottish background! So it could be a possibility!
My main issue is my sinus/ears as that has been chronic for 2 years and just seems like everything has turned systemic now.
The only way now is for me to start eliminating causes until I can find an answer and get better! Thank-you for all your help :)
Does anyone know of any hormone related problems that can effect things like this as well? Perhaps I have a hormone imbalance, Thanks.
Yes they have ruled out fibromyalgia as my symptoms where more Central Nervous System based rather than chronic pain over my body, I also have dizziness when i stand up and loss of balance when standing.
Ok thank-you I will start to look into getting heavy metal testing done.
I know I have low iron levels so there could be something there thats linked.
I have half european/Irish and Scottish background! So it could be a possibility!
My main issue is my sinus/ears as that has been chronic for 2 years and just seems like everything has turned systemic now.
The only way now is for me to start eliminating causes until I can find an answer and get better! Thank-you for all your help :)
Does anyone know of any hormone related problems that can effect things like this as well? Perhaps I have a hormone imbalance, Thanks.
Ok thank-you I will start to look into getting heavy metal testing done.
I know I have low iron levels so there could be something there thats linked.
I have half european/Irish and Scottish background! So it could be a possibility!
My main issue is my sinus/ears as that has been chronic for 2 years and just seems like everything has turned systemic now.
The only way now is for me to start eliminating causes until I can find an answer and get better! Thank-you for all your help :)
Does anyone know of any hormone related problems that can effect things like this as well? Perhaps I have a hormone imbalance, Thanks.
Hi, the heavy metal toxicity is a great place to start, iron is an especially abd one as everything we at now adays is fortified with it, supplemenets, cereal, foods, etc. Copper is used in grain fed animals to sped up growth. There are others. Others have mentioned them.
To measure iron stores you need a ferritin, transferrin saturation, TIBC and serum iron tests done. This measures how iron is stored in your body, how much is bound and how much is available and floating around, which then becomes free radicals. Havoc is all I can say. And there is much info regarding iron overload.
The genetic mutation of the iron overload disease known as hemochromatosis is found predominantly in people of Irish/Scot/Welsh, and European background.
Good health wishes...hope this helps, along with others suggestions
To measure iron stores you need a ferritin, transferrin saturation, TIBC and serum iron tests done. This measures how iron is stored in your body, how much is bound and how much is available and floating around, which then becomes free radicals. Havoc is all I can say. And there is much info regarding iron overload.
The genetic mutation of the iron overload disease known as hemochromatosis is found predominantly in people of Irish/Scot/Welsh, and European background.
Good health wishes...hope this helps, along with others suggestions
Yes the doctors have finally put me on prednisone which is a form of steroids except it hasnt't been working very well, The nerve pain has decreased somewhat but still experiencing sinus problems, blocked ears etc. I have been to an immunoligist, rhumatologist, neurologist and ear nose and throat specialist all of which have given me no answers.
I will certainly look into Functional Medicine, thank-you. How old where you when you started developing symptoms?
Can i ask what sort of treatment the Functional Medicine doctors use?
As the typical doctor approach isn't working for me. Nearly every doctor I seen for about a year always told me I had a virus and thats why I had a positive ANA test result expect it has never gone away.
I don't have any dental problems don't have any fillings either, don't have any birth control inserted into me. The only thing my parents mention is the pre school I attended had led poisioning in the soil. So perhaps it could of been in my body all this time and symptoms have just shown up in the recent years. Thanks :)
I will certainly look into Functional Medicine, thank-you. How old where you when you started developing symptoms?
Can i ask what sort of treatment the Functional Medicine doctors use?
As the typical doctor approach isn't working for me. Nearly every doctor I seen for about a year always told me I had a virus and thats why I had a positive ANA test result expect it has never gone away.
I don't have any dental problems don't have any fillings either, don't have any birth control inserted into me. The only thing my parents mention is the pre school I attended had led poisioning in the soil. So perhaps it could of been in my body all this time and symptoms have just shown up in the recent years. Thanks :)
Hi There. I suffered similar symptoms that you are experiencing for years. The only conventional treatment for auto immune disease is to shut down the immune system so it stops attacking you. That goes against common sense so I opted not to go that route.
I urge you to find a Dr who specializes in Functional Medicine. It turned out that I have genetic mutations that causes my body to not be able to detoxify. The built up toxins including heavy metals are what was causing my illness. There are very specific tests that will be able to diagnose but most doctors don't know anything about them. I was round and round with more than 30 doctors for 5 years until I finally found the one who correctly diagnosed and treated me. I was so fatigued I couldn't work or do really anything for 5 years and now I am back to just about normal. I used Charles Gant MD at NIHA in washington DC. If you are too far to travel there you can do a phone consult. I give him my highest recommendation.
You can check out the titanium dental implant thread on here too. idk if you have any dental implants, mesh, surgically implanted birth control, metal rods, root canal, etc. but there are many people on that thread who are suffering similar symptoms. http://www.medhelp.org/posts/Allergy/titanium-vanadium-aluminum-dental-implant/show/1252386
best of luck to you
I urge you to find a Dr who specializes in Functional Medicine. It turned out that I have genetic mutations that causes my body to not be able to detoxify. The built up toxins including heavy metals are what was causing my illness. There are very specific tests that will be able to diagnose but most doctors don't know anything about them. I was round and round with more than 30 doctors for 5 years until I finally found the one who correctly diagnosed and treated me. I was so fatigued I couldn't work or do really anything for 5 years and now I am back to just about normal. I used Charles Gant MD at NIHA in washington DC. If you are too far to travel there you can do a phone consult. I give him my highest recommendation.
You can check out the titanium dental implant thread on here too. idk if you have any dental implants, mesh, surgically implanted birth control, metal rods, root canal, etc. but there are many people on that thread who are suffering similar symptoms. http://www.medhelp.org/posts/Allergy/titanium-vanadium-aluminum-dental-implant/show/1252386
best of luck to you
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