Syndromes of sarcoid? Should they be less of a guide?

priscurl
2 Recommendations

I have read a lot about sarcoidosis over the years and as a sarcoidosis sufferer, a lot of the statistics make no sense to me. From my point of view, these statistics have always been a barrier to getting treated.
I'd like to know how many other people out there find this problems with doctors.

First of all, there are a bunch of syndromes out there all associated with sarcoid.

There's Boeck's Syndrome, Lofgren's Syndrome and Heerfordt's Syndrome.

If you have hilar adenopathy and erythema nodosum, your sarcoid is supposed to clear up within a short space of time.

I have, or have had, some manifestations of all these syndromes. I had elements of Heerfordt's syndrome before any of the signs of hilar lymphadenopathy manifested themselves. I had severe dry eye and dental problems related to a dry mouth, parotid swelling, which at times caused eye tearing, pain, numbness and tingling. This was accompanied by a slight fever and severe sweating. My ESR was raised as was the CRP. I was also getting recurrent severe and worsening migraines. Because of the raised sed rate, the immunologist kept her eye on me for three years, but was totally mystified by the facial swelling and paralysis, which to me, were more disturbing than any of the pain or fatigue I had developed. Three years into being 'observed', I developed a cough and EN. I knew I had sarcoid and got an x-ray which confirmed it. I was sent off to a pulmonologist, who said he would observe me for "two years". Two years went by with no appreciable betterment in the joint pain and fatigue. In my book, they were getting worse. The pulmonologist said I was cured and he didn't need to see me any more. I saw a rheumatologist who didn't believe I had had sarcoidosis, but treated me for recurrent bursitis. Then I developed the facial problem again and it was diagnosed as sarcoidosis. I have had two bouts of this problem. I also had another dose of EN with lung infiltration which supposedly cleared up. Now I have just been diagnosed by biopsy with sarcoid plaques on both knees. Skin sarc doesn't alway have a high ACE to go with it, but my last ACE several months ago was 108. My x-rays are negative. So what the hell is going on? Do I have sarc or don't I, and why can't science agree on anything? Surely not all individuals fit the sarcoidosis moulds that have been derived perfectly?

Pris

20 replies

shadowtoonces

I have a feeling it's gonna be this way for awhile. I see exactly what you are saying. It is so frustrating and I'll be damned if the medical field starts poo-pooing this and making it the diagnosis of the week or treating us with whatever because they don't know or think we are hypochondriacs. If they don't know, then keep sending us on to someone who does, because there are doctors and specialists and research and nurses that do care. And you are right, I suppose it can get frustating with all the contradictions in statitisics. That's why we gotta stay at the forefront and the most we can do is help to raise awareness and lobby about it. I don't know much about that yet, but I have a pretty good feeling that I will. What scares me is that people who suffer from fibromylgia get poo-pooed and their concerns not validated. I pray that doesn't happen with sarcoidosis. I know I'm putting up one hell of a fight this way and hope you guys are too....by the way, I don't think I've ever said poo-pooed before, but insomnia is back and that is the only word I can think of right now.....remind me to not use that in my letters to legislature...........lol.........I am so thankful God watches over me, Someone has to..........take care and always praying, Dawn

gonenatural

Hi Pris,

I also get some of the symptoms that you have mentioned and others and they just come and go. Like one day I went completely blind 3x. Sometimes I will walk into a store and be carried out. I would have severe migraines and see colors, now I am fine but it always come back in some fashion.
I don't understand how our symptoms can keep changing. I guess this is why drs are confused.
Here I am having every symptom of lung sarc and my x-rays and biops are ok, 1 very bad ct scan, hard time breathing and chronic cough/gag.
I have to look at my paper work but I am guessing I've had my EN for over 1 yr now. The degree of it changes but the pain will not leave. Shame drs can't see pain.
I was dx'd with skin sarc due to the keloid on my neck and my ace levels are ok. The pulmonary sarc specialist that just quit doesn't believe is ace levels. He says for many they are not elevated.

I understand all you are saying Pris.
Have a good week.

micheleb

Its all more than frustrating. The decline of my health started with miscarriages, than joint pain, fatigue, uvieitis, joint swelling, severe headaches, later dx as migraines, etc. FOUR long years of countless doctors, specialists and a large, well respected hospital.....more dx than I can count-not a single one correct.

I didn't really develop breathing problems until last fall, that's when a cat scan finally showed "something" in my lungs, later biopsy confirmed sarc. First sarc doc I saw was CLUELESS. I finally found a good one and he says everything, all my symptoms are sarc. I had already tried all the immune suppressant drugs when they thought I had reactive arthritis, than RA.

Mine was not a typical case because I had no lung involvement that I know of until years after the other symptoms started. I have been seeing a lot of improvement on remicade and I see the pulmonologist who is my primary sarc doc in a few weeks. He doesn't strike me as the kind of doc to say your are cured even if it doesn't showed up in my lungs anymore but from hearing a lot of peoples stories here, I can't help but be a little worried myself.

I think if you have had a biopsy confirm sarc, than there is no question that you have it. We can see from the many symptoms that people have here that sarc effects everyone a bit different. I believe that if your are having bothering symptoms that you should try to at least treat the symptoms, especially if you have had it more than the magic number of 2 years.

Krissy

It seems that there has been no real progression in the diagnosis & treatment of sarc since it was first discovered. It is a miracle to even get a diagnosis. Every sufferer has their own individual list of symptoms. Many of these seem to be dismissed by many doctors as other illnesses and nothing to do with sarc. What can we do?

SP

Too bad we're not all in one big area together.
You know, like an epidemic.
Then they'd look at this disease differently and be compelled to learn about it and ALL it's symptoms and we wouldn't have to play hit or miss with more than one doc or specialist trying to find relief for ALL the symptoms.
I'm going back on the 4th for a sematasensory evoke potential test, ANOTHER brain MRI, and an ultrasound of left leg to hopefully find, recognize, pinpoint, prove, or whatever.
I'm praying the Neurologist can find some relief for me, I feel he is good at his job and determined.
Anyways, God Bless You All, stay strong.
SP (Sheryl)

priscurl

Hi all above,

I dug out a photocopy of a medical book I did about two weeks after I was diagnosed.
According to the doctor writing it, it seems that the onus is on the doctor, not on the patient to get this disease treated. If a patient with sarc presents with new symptoms, it is up to the doctor to find the sarc. If the symptoms are caused by sarc and a doctor cannot find anything wrong, it says more about the doctor's ability as a clinician than it does about the patient. Dr Katz says sarcoid diagnoses depend on the specialties of the doctors involved. Opthalmologists will find sarc in eyes, dermatologists will find sarc in the skin etc. The absence of symptoms does not add up to the absence of sarc.
Here's what Dr Katz says;
"Involvement of an organ may be great without clinical manifestations"
This is true; 90% of kidney function may be lost before the patient will develop any symptoms.

But the very, very interesting bit is this. The docs who are feeding us this BS were not listening when they were at med school. Or, they have ever-so-slightly misinterpreted what they have read about sarcoid.
As I read this book chapter on sarcoid by Dr Katz, it does NOT say acute presentations will be over the disease in two years. Katz writes:

"It is helpful to categorize patients into two major sub-divisions - those with sub-acute disease of less than two years' duration and those with chronic lesions of more than two years duration. Since these varieties are NOT ALWAYS SHARPLY DEFINED, syndromes related to them WILL OVERLAP"

Subacute disease is usually picked up by accident in people under 30. In other words, they have the disease but they were not old enough for the symptoms to begin their manifestation.

Katz goes onto say that onset may be announced by erythema nodosum, acute uveitis, peripheral lympadenopathy or parotitis.

It does not say anything about if you have hilar lymphadenopathy and EN the disease WILL REMIT IN TWO YEARS --- IT DOES NOT SAY THIS!!!!!!!! It says if you have hilar lymphadenopathy and EN there is a good chance the disease MAY, MAY MAY remit in two years. IT is NOT a GIVEN.

It goes on to say that LATER there may be development of ocular disease, salivary and lacrimal gland enlargement, peripheral lymphadenopathy or pulmonary lesions and these WILL APPEAR WITHIN TWO YEARS OF ONSET.

Katz goes on to write
"Chronic sarcoidosis has an insidious onset with manifestations occuring later in the disease and persisting beyond two years. The patients are often over thirty."

Patients with chronic manifestations may have passed through the subacute phase that went unrecognised.

So this hilar lymphadenopathy and EN do not add up to "two years and you will be cured" at all. It is an utter and total myth which has been developed by doctors who have oversimplified what they have read, which means they have not read what they have read critically.

The way I read KATZ is this is, if you are caught and treated in the very early stages of the illness, there is a good chance it will go into spontaneous permanent remission. The later it is found, the less likely it will remit of its own accord and if you are older than forty when you are diagnosed, then you probably have little chance of it remitting of its own accord.
The onus is on the doctors to find it and treat it. If you already have sarcoid, don't put up with a doctor who won't help you, find one who will. Your health is at stake.

The book I got this information from is "Sarcoidosis and other Granulomatous Diseases of the Lung".
Edited by Barry L. Fanburg

Two years and you will by cured is a Myth. Don't stand for it.

Pris.

ilovethebluz

Pris,

I am a testimony of what you just said. Had I been more insist ant 10 years ago when I had a heart block and doctors couldn't find why, even then it might have been to late, I might not be in my current predicament. It wasn't until I went in thinking I had walking pneumonia, but instead had only 2 % kindney function did I get diagnosed.

Another thing to consider is heredity. My dad was diagnosed during the 50's in England, while serving in the military. His scarc must have gone into remission. My sister and I both have scarc. Looking back, we both had symptoms as early as our teens.
It wasn't until our 40's that it progressed to the point that it caused us serious problems.

Thanks for your info.
Sabrina

blondinette_27

It seems that so many doctors do not understand this illness. My 4 year old was diagnosed with early-onset sarcoidosis when she was only 2. I don't know how many times I have heard doctors or people say that children do not get sarcoidosis. Most doctors I have met did not even know about "early-onset"sarcoidosis (except pediatricians). What if they had found her illness only when she was in her twenties, how would the doctor have distinguished if it was early-onset sarc or not. I wish more research could be done.

Thanks for this post.

priscurl

Hi Blondinette,

I am sorry your little one has been lumbered with this illness. It is supposedly rare in kids, but many people with the illness can actually go back years. They may not be right, of course. I think it would be more difficult to convince a doctor a child is ill with such a strange illness, than it would be to convince a doctor that you yourself were ill. Children are supposed to be resilient. What made you realise things weren't right with your child?

Pris

Pris

blondinette_27

Hi priscurl,

Sarcoidosis is less common in children, but then again, it is very hard to determine because this illness is very similar to juvenile rheumatoid arthritis (in kids 0-4). It took us awhile to notice something was wrong. At first she only had a rash on her hands and feet, but then it started spreading. She was prescribed tons of creams because the doctor thought it was only excema. A few months later, her wrists, fingers, knees and ankles began to swell to the point that we had to carry her downstairs when she woke up. They did a biopsy to rule out cancer and other disorders, and at first they suspected a lipid storage disorder which would have been fatal. I could not live with that, so I began searching on the net on swelling and rashes. Arthritis was mentioned a lot, so I asked our family doctor to refer my daughter to a rheumatologist. She was seen almost immediately because her symptoms were quite severe. They diagnosed her with juvenile idiopathic arthritis at first, but following another biopsy of her rash, her diagnosis changed to early-onset sarcoidosis. I'm just glad she had a rash, otherwise no biopsy would have been done, and she would be diagnosed with juvenile arthritis or something else.

priscurl

Hi Blondinette 27,

Thanks for sharing that information with us all. At least us adults can tell the doctor where it hurts etc. It's a whole different kettle of fish for little ones. I admire pediatricians greatly. I am so glad you got it all sorted out, and brownie points to you for persevering when your doctor said it was "only eczema". I was told my psoriasis was "only eczema". When things don't sit quite right, you must persue them, even at the risk of being called a over anxious mother, or over anxious patient. Often mothers and patients know better than a doctor who has known them or the child for five minutes.

Pris

trek50

We definitely don't fit into any molds. You have a lot of the symptoms I have. I have been sick for 9 years. Neuro sarc is the diagnosis, although they are beginning to think it has spread. It took several doctors before sarcoidosis was considered. I have been treated with remicade for 2 years now and have relief of my most severe symptoms, at least for the time being. I was so disabled, choosing a scary drug like remicade wasn't much of a decision for me. I wanted quality of life over quantity. I am willing to risk the problems associated with this drug. I have already survived one nasty bout of pneumonia that it probably caused. We are always between a rock and a hard place trying to make medical decisions. Doctors are just beginning to understand this disease. Some doctors, that is. Many have no idea what it is or how to treat it. Sorry I couldn't be more positive.

priscurl

Hi Trek50,

It is understandable. I think at least if you are in the USA, the doctors see more people with sarc, especially in the southern states. They even have specialty clinics where you can go if you've paid your insurance and have not faired well with local doctors. Here in Australia docs see about 5 to 8 sarcies in 100,000 people. Australia has a population over 100 times smaller than the States. There are no sarc centres. There are few sarc researchers (I know of three). Most doctors see one or two patients with sarcoid during their entire careers. I think I have known more about sarcoid than all the doctors I have been to see. Whats worse, some of them actually admitted it. In some respects, that is good because they either ask for help, or they are prepared to listen and do some research themselves (this is always miniscule in amount and time).

Denise

JAYS_MOM

Wow, sounds like we're not the only ones who have had an awfl time with this. My son started by telling us that he saw pink when he got headaches..........my son, bless his heart, has been known to play hookie from school, so as you can imagine, it took a while for his father and I to realize he wasn't pulling our legs, then we started with the medical field.....all we kept hearing was that he looked robust and healthy and there is no reason for him to see pink. As awful as it was he ended up colapsing in our yard, where we took him to the emergency room and got a chest x-ray, which showed massive lymph nodes. I feel horrible now, but it just seemed so wierd in the beggining.

priscurl

I am sorry to hear about your son. Doctors don't seem to think children get ill. But that isn't true, cause they do, sometimes gravely ill.

I reckon I had sarcoid in my late teens. The doctors kept saying they couldn't find anything at all wrong with me. They kept saying it was end of school stress and I would recover once I had settled into life outa school.

I kept on getting worse. I had severe sinusitis, endometriosis and a pituitary adenoma (and I was only 19). All this necessitated three surguries. My mom had to practically put the doctor in a head lock and arm lock to get the necessary referrals.
Once I was referred on to the gynecologist, ENT and endocrinologist things moved fairly quickly. Four years we spent trying to convince the GP something was wrong. They think because you look young and healthy that nothing can be wrong.
My cousin's boy is only 19 and has cardiomyopathy. He had a difibrillator inserted into his heart yesterday in a four hour operation. Younguns don't get sick?

Pris

trek50

My younger son is 17. Last year he complained of being nauseous frequently. I wouldn't make him go to school when he felt ill because he never was a loafer. Then one day he asked if his poop is supposed to be red. After months of tests we found out he had Crohn's disease. I always take my kids complaints seriously. My other son was 16 when mono attacked his heart muscle. Luckily he rallied and is fine today. It started one day, quite suddenly with chest pain. We live in Canada. We would be in deep ____ if we didn't live here. Yeah, lightning can strike one family many times.

harmles2

Getting back to your initial posting .....(and these are points I know you already know, but I post them for the discussion) I make the following points …

** Statistics ... oh can we manipulate people with them. I forget the name of the book, but I read it and it has to do with the error and lies in stats. As you point out, these stats interfere with good medicine.
** Precisely why medicine is still “practicing” and Dr’s get diplomas to “practice” medicine. Medial science (while hugely beyond what it was in the dark ages) is in its infancy. No one should have the expectation that going to a Dr for an ailment will be like getting the engineering done for a house, the complexity is by order of several hundred times more complex. I view medicine with a mixture of awe and doubt ….. all of us in this group know how easily things get missed.
** Dr’s do try to fit us into the stat’s ….. if you get a normal ACE test, it would appear that 90% of Dr’s will dismiss sarc. If a lung biopsy doesn’t get a positive sarc result, only perhaps 1 of the remaining 10% of Dr’s would try again. (the medical people here know that only a tissue with sarc will show sarc, the dr has to “hope” { seeks a region where the x-ray shows it} he gets a location where sarc is active)
** Insurance and managing costs factor in to decisions, and that’s a good thing. At the same time, it would appear that many Dr’s do not “push” to dig deeper, when they alone hold the power to demand more or repeat tests.
** Putting faith in “science” is not always warranted; science is a constantly evolving discipline, what was thought to be true today, may be proven wrong tomorrow. Science is better equipped to determine (by repetitive experiments or studies) what doesn’t work than what does work. Science (medical for our discussion) can say that “antibiotics kill bacteria” until it doesn’t, …… then it doesn’t, that’s it. Science establishes laws/rules but the rule/law must fall when it fails just once. The human body (and thus medical science) is much more complex than gravity for instance.
** Somewhere medical science drifted off line. It used to be about true science, now its about $$. Our Dr’s are merely funnels of the drug companies. Patients clamor for a quick pill, Dr’s have 10-15 min to make a decision, it’s all geared to pills.
** Thus, studies are now done mostly by drug company labs rather than independent research labs, the motives are no where near the same. Mayo Clinic shines as a beacon to the old way and better way of research.
** Consider the complexity of the human body and how we are all different, what works for you may not work for me, what attacks you my body may resist.
** Similarities between diseases as you pointed out can overlap and be quite confusing. Consider that types of cracks in a piece of steel when a bridge or building collapses or an airplane comes apart. It takes very highly trained experts to tell the difference between one crack cause or another, was it a defect, was it stress, was it improper application, etc. Yet to most welders, engineers, contractors, one crack looks like any other crack. Same with Dr’s, we (and those with complex diseases) will not get where we as patients need to go with a standard Dr, it takes someone “really” knowledgeable to decipher what is going on with our body.
** As I mentioned in an earlier post, Dr’s like all professions are on a bell curve of knowledge and ability. 70% are about average, 15% are really bad, 15% are above average. We have to be diligent in getting a good Dr or team of Dr’s.


And for all the medical professionals I shall not ignore the following very important points …

** Patients do not always tell the truth, they occasionally out right lie, they nearly always exaggerate, and whine, a Dr has to try to filter out what matters and what doesn’t.
** Most patients will have several other bad habits that could be working them over causing some of the same symptoms, but not do anything, nor are willing to do anything about them. Consider the smoker or over weight person who has a “new cough” or “swollen ankles”, with the demand, “fix me doc so I can still smoke and over eat”. I have a client who has throat cancer, but he will not stop smoking because he was told his throat cancer was not caused by smoking. Hey if we do not care, why would we expect the Dr to care?
** A patient may be abusing drugs, alcohol, or other substance.
** A patient may be leading several unhealthy lifestyles.
** When its genetics, whats a Dr ta do?



And finally, where a lot of blame can go ….
** Lawyers, ……… they stifle just about everything, add costs, procedures, and paperwork that have nothing to do with “treatment” sucking up huge sums of money that could otherwise be put to good use. True, we need justice thru the court and a lawyer when someone deliberately screws us over, but that’s less than 5% of the time, while the legal implications have impacted 100% of medical care.

I’m sure I’ve missed several things that also hinder the process (due to sarc related complications but I’ve got no diagnosis to conclusively prove that, to your point!) that others could chime in with.

harmles2

Tawney

You've nicely summed up the situation there, Harmles.

I'm a little bruised from my last attempt at a specialist visit a couple of days ago and everything that went wrong in that visit is summed up in what you said.

All I can add is that a doctor should never assume a patient is lying or exaggerating or falsifying information because they can't make sense of the picture.

I think that the length of time doctors need to take to get their degrees needs to be lengthened. So many new conditions have been discovered, so much more research has happened and doctors seem to be practising with no knowledge about some things which I consider should be basics. In fairness, doctors can't be crucified for that; it's a system, red-tape fault. More time training, more time in carefully considering and diagnosing - that would go a long way.

And every doctor in every field should have at least an idea of what all blood tests mean. How can you talk to a doctor about your condition when they have no idea what your pathology results mean! I don't know what that is so it can't be important is an outright dangerous practising methodology!

priscurl

I saw a good show on Bio today called Mystery Diagnosis, I came in part way through the second story, and from what this girl was describing, I was thinking autoimmune, ? sarcoid or myasthenia gravis. The droopy eye gave her away for me - myasthenia gravis. The girl was dismissed because her symptoms didn't appear to match anything they knew of right out of the box and anything like MG was too rare (and I have to admit she was pretty young to get it). However, an opthalmologist sent her to a neurologist and he was able to diagnose it by administering a drug. He also to got her to repeatedly do an exercise which weakened her eye muscles.
She had been dismissed for three years by doctors who had labelled her a hypochondriac and attention seeker. If it hadn't been for her boyfriend, she would have died a couple of times over. Once she choked, the second time she had a severe reaction to an antibiotic.
I almost had the second guy correct too. He had a problem with postural hypotension. It was caused by a heart arrythmia. So it was only when he got out of bed on rare occasions that he felt sick and had to go to the bathroom that the postural hyptension kicked in and he collapsed. They had the guy on antiseizure drugs, but it wasn't electrical, it was the fact that his heart wasn't pumping blood to his head and his seizure was due to lack of oxygen to the brain. Lucky the neuro was on the ball. These guys are seeing top men in their field. Doctors tend to say its too rare for this person to have it too often in my book.

Pris

myhealth

I've enjoyed reading your statements, a great deal of them are very interesting and informative!!! Thanks!

However, I'm sure some of us will have some disagreements with some of the following statements. Nothing against what you said, because I do believe some people might fall into these categories, and it's food for thought, but there are also people that don't, like me. Not all of us should be categorized into groups or stereotyped. After all, each of us is truly an individual.

"** Patients do not always tell the truth, they occasionally out right lie, they nearly always exaggerate, and whine, a Dr has to try to filter out what matters and what doesn't’t."

My own personal experience, I actually withhold information and don't speak to the doctor. It has always been pounded in my head to respect people in certain positions - one is the doctor. I was also taught not to whine about health issues... to toughen up and press forward!!!Furthermore, I somewhat panic with thoughts, so I cannot remember well. So, I clam up during an office visit! When I was finally dx'd with Sarc, I sat down and typed out for over 2 weeks my health diary - I then printed it out and gave it to the doctor. I felt that it was time for me to reveal everything that has been going on with me, for so long. No complaining, just facts. So, I'm at fault with this... I don't even communicate enough with the doctor like I should, so how could they treat me correctly! If they asked one specific question - I was always brief and to the point.

Any ways, since having the cancer scare and biopsies twice within a year... and joining this group reading similar problems that I've also been through... I'm finally learning to come out of my shell because I'm just stinking tired of being sick!! And maybe me speaking up, can help Sarc patients in the future.

"** Most patients will have several other bad habits that could be working them over causing some of the same symptoms, but not do anything, nor are willing to do anything about them. Consider the smoker or over weight person who has a “new cough” or “swollen ankles”, with the demand, “fix me doc so I can still smoke and over eat”. I have a client who has throat cancer, but he will not stop smoking because he was told his throat cancer was not caused by smoking. Hey if we do not care, why would we expect the Dr to care?"

I do admit there can be people that will do whatever and don't care. But if there are legitimate health reasons for some patients that cannot help why issues are happening inside their bodies, and do what they can to help themselves, then they should not fall into the same category as others.

I'm one of those people... people constantly believe I'm overweight due to over eating. It seems that in society people constantly develop this myth that all people must over eat if they are overweight. It simply is not true!

I think it's hilarious how these same people always out eat me every time, including drink, smoke, take diet pills, etc.!

My problem is: I hardly ever have an appetite or want to eat. I loathe food because what it does too me! I constantly bloat, have G.I. problems from top to bottom (IBS, heart burn, inflammation, etc.) food allergies, including thyroid problems, gland problems, diabetes since I was a child (which taught me to stay away from sweets and carbs), several surgeries, chronic fatigue syndrome and Sarc... and...

I think you've got the picture. Some people cannot help why things are happening to their bodies, it just does. Not to mention that body chemistry (hormones, stress, etc.), failing body parts (glands/parts working too much or too little, etc.), heritage, the way one is raised and what type of food family normally eats, cost of living, and genetics do play rolls. Most of my one side of the family - their bodies were, shall we say, "Husky" big-boned people, including the women... great for farming - which is what they did!! No beauty pageants here, folks! They lived off the land and what they grew... ate what was available at the time... cost of food always effects what you ate at home... normal every day working folks that couldn't afford what others can!

Including, past injuries and what type of jobs one might have had in their lifetime. I cannot count how many times both my ankles have been sprained repeatedly... never going to the doctor for this problem either. Damage has already been done without ever any treatment! Hence, the swollen painful ankles, and the fact that females are different then males and they do retain water more so, especially in the ankles. Then, wow, you have Sarc, too!

No one should be labeled when it comes to the medical profession!

That's why I have the majority of people, including the doctors, take one look at me and think... God she must eat 100 lbs of food a day! When that is farthest from the truth and actually my body is retaining fat because I don't eat. I'm starving myself, not on purpose, it's just impossible to force food down. Just one meal a day... food still always on my plate... is my daily norm! I drink a ton of water!!! I know small meals throughout the day is best... rarely, I can manage this on a good day, but for the most part... my body feels full (I'd love to stick a pin in it and pop it!) and it cannot take on anymore! If I do... I will end up in emergency like I have in the past! I've even tried only juicing... it builds up way too much gas in my system! I've tried IBS, South Beach, and any diet you can think of... and they all end the same way. So, for medical reasons... each day is a new day of what my body can handle... and I do the best I can with what I've got!

Furthermore, being that my whole body hasn't been tested or had an exploratory surgery... God only knows how many tumors might be lying throughout my entire body... since I have a norm for developing them! Or how many organs are effected by Sarc... haven't done enough testing to know everything yet! I do know my spleen and liver is, showing up on CT scan, but haven't got help for that yet. Who's to say, maybe some of my weight might be due to this very reasoning. These things do happen to people!!

"** A patient may be abusing drugs, alcohol, or other substance."

Never took abusive/illegal drugs a day in my life. Don't even like taking prescribed meds unless I have, too.... I actually refused meds in the hospital before. Don't drink alcohol for GI issues and frankly don't care for the stuff! Funny how when I was referred by a doctor to go to emergency and spent an entire week in the hospital - 1st thing they checked for - was exactly these items you described! They thought I was high on something!! Nope! Turns out only 1 doctor understood what at least one issue was going on with me, and that was my Gall Bladder... no one else knew that it was multiple things at once and I was extremely ill, creating what they thought a HIGH! I understand ruling this out... but at the time I did have a profession that didn't allow such behaviors and you'd think that they would consider that! Of course, by many of the other doctors that saw me... I was consider a NUT because they couldn't find anything. A week later my gall bladder was removed - it was told to me it was not working properly and was causing an infection in my body. But I'm crazy!!!

"** A patient may be leading several unhealthy lifestyles."

Don't know what those are? So cannot comment... but I have an extremely simple easy (Leave it to Beaver) modest lifestyle, so probably don't fall into this category. But I'm sure what may seem unhealthy to some, might be healthy to others. Just like we can drink coffee, we can't, we can, we can't... Who's to say what is correct for all?

"** When its genetics, whats a Dr ta do?"

So very true!

Please take the following with a grain of salt, it's just what I feel in my heart to be true. I learned a long time ago that God created us as individuals and we all need to be treated and respected as such. That He also has a great plan and purpose for us all! It usually isn't what we want it too be, but He always knows best!! Even if it means, that we have an illness in our body. (I'm not saying God put it there, but He may have or allowed it to happen, and only He knows the truth! - I always look back on the book of Job). Maybe it's just our time and this is how it's going to be? I believe more in the power of prayer, then in people.

I feel in a nutshell, that this is why the medical profession has a hard time trying to "Heal" people... when a miracle does happen, it's because God wanted it that way, He did the healing, and doctors will sometimes reveal that they really had nothing to do with it! I honestly believe that doctors do only treat symptoms... through surgery and/or meds, they cannot totally cure the complex body and for the most part, do what they can. There still are caring doctors that aren't out for greed and do want to help with what they can, we just have to pray for them to come into our lives. There is good and evil in all professions and walks of life! I've also learned that if you get to know people... most do have caring hearts and will do good deeds... even if they have done evil in the past!

I also realize that not all people believe in the same God or religion... I don't hold anything against them for this... or want to cause harm or offense of any kind. I also realize that for the most part, science in today's society doesn't allow room for religion. Although, I feel that is why science (nature) exists in the first place, but we all have our own beliefs.

Any ways, I've wrote 3 books... and got off topic a little, sorry about that! Blame it on my lack of nutrition... I need to go force myself to eat.

Take care!

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