Discussions By Condition: I cannot get a diagnosis.

No unifying diagnosis in nearly a decade. Please help!!

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: sickt00long
  • October 29, 2007
  • 07:35 PM

I know my situation is not unique. I have over a dozen doctors, most are specialists. I've actually been "diagnosed" with dozens of things. My medical file is a foot thick. Between my insurance provider and me, we've spent six figures on countless tests and procedures, including surgical biopsies. This naturally led to a lot of "smaller" diagnoses that cover a subset of my symptoms. I really find it difficult to believe I just happen to unfortunate enough to have twenty some-odd conditions across numerous body systems that are not correlated in any way. Contrary to what my former spouse likes to say, this is not psychosomatic. I've got extensive records documenting clinically "remarkable" findings, objectively measured on expensive equipment and analyzed by real doctors.

Unfortunately, I cannot find anyone to coordinate all of the information from these pysicians and to proactively seek a unifying diagnosis. (For what it's worth, I believe this is essentially due to the economics of our health care system and medical insurance reimbursements, but that's another topic entirely). I'd love to find a real-life "Dr. House"... someone smart enough and stubborn enough to ban the term "idiopathic" from his/her vocabulary. I don't think such a person exists. I'd love to be wrong. Please prove me wrong!

I know I'm sick. I've been sick for a long time. I have a lot of different conditions/syndromes. What I need is to name my illness and prognosis. I need this for a number of reasons, not the least of which is litigation support. But also, it's very personal. I just need to put the whole process to bed. I'm exhausted from seeking a diagnosis for nearly a decade. I've been studying like a medical school student for years, so that I can take control over my own diagnosis. I've found that my medical knowledge just *****s off the doctors. They apparently don't like difficult questions from knowledgeable people.

On this site, I'd love to get some professional conjecture on the universe of potential diagnoses that explain the majority of my "conditions". Ideally, I'll find someone willing to actually help me find the real answer. I'm happy to pay for it. For what it's worth, I've been "officially diagnosed" with the following (in no particular order) ...

Gastrointestinal
Gastroesophageal Reflux Disease
Hiatus Hernia
Barrett's Esophagus

Cardiopulmonary
Hypertension
Chronic anemia, not iron deficiency
Pneumonia
Bronchiolitis
Chronic Obstructive Pulmonary Disease
Diffuse Interstitial Pulmonary Fibrosis
Tachycardia
Reactive Hypoglycemia
Phlebebolith Formation in Pelvic Basin

Musculoskeletal
Cervical Spondylosis
Spinous Process Fracture at C7
Lumbar Discogenic Spondylosis (Degenerative Disc Disease)
Dextrorotary Scoliosis in Lumbar Spine
Hypolordotic Cervical Spine
Retrolisthesis of L5 and Lumbar Spine
Facet Syndrome

Neurologic
Sleep-disordered breathing
Mixed Sleep Apnea
Obstructive Sleep Apnea
Reduced Sleep Efficiency
Chronic Major Depression Partially Refractory to medication
(Possibly secondary to issues with medulla oblongata)
Dysautonomia, chronic generalized

One theory is that any one or a combination of closed head injuries and/or chlorine gas poisoning earlier in life, led to damage (or somehow de-tune) my medulla oblongata, causing an "idiopathic" autonomic neuropathy, which jacks up various body systems in an unpredictable manner. If so, I have no idea what that is called or how it is officially diagnosed. And what is my prognosis? And how does that explain everything, e.g. degernerative disk disease, or numerous chronic inflamatory processes. Some people laugh at the idea.

Can anyone here help me? Please?!!

Of course, I will answer any and all questions immediately.

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12 Replies:

  • What makes you think you can categorize all your symptoms into one disease label? Obviously you have several things going on. How old are you. Could any of these problems be age-related? Scoliosis related? Many people think if your spine is out of whack, then your whole body is subject to disease. Have you tried a D.O.? or chiropractor? Are you over weight? Does Nexium control your GERD, Barrett's etc. Can you see this progression?...overweight OR weight-lifter...hiatal hernia...GERD...Barrett's esophagitis?...posssibly pneumonia...sleep apnea etc. Do you use a C-Pap machine at night? Sleep apnea...to hypertension...heart issues (tachycardia) and COPD etc. Spinal problems...poor sleep...no exercise...facet problems... Anyway, maybe it's time to forget the past and focus on a healthy life-style for the future. Eat right, maintain a proportionate body weight, try some gentle yoga or do some swimming and stop worrying about your health. Volunteer and stay busy. Be kind to yourself...get a massage. Read some good fiction, not medical literature.
    rad-skw 1605 Replies
    • October 30, 2007
    • 10:19 AM
    • 0
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  • I have many of the dx's you have, most of which were caused by 20 yrs of UnDX'D Lyme and co-infecrions. Knowledge is power. Do some research and see if it fits you. Good Luck ~~Dee
    Anonymous 42789 Replies
    • October 31, 2007
    • 11:48 AM
    • 0
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  • I don't know what the causes of your problems are. But I know the feeling of not getting a correct diagnosis. In my case it took 18 years before a rare parasite was found. I was told that I would live at most another year without treatment.My list of (mis)diagnoses is not quite as long as yours. When doctors failed to come up with the answers they are supposed to provide, they either told me to see a shrink, or they recommended (as one guy does here), to "think positive" and to "live healthily". I was always sure that a bug was causing my problems, and eventually I was proven right. I fought for long, but towards the end I ran out of energy and was completely broke. I knew I was going to die.But then, a friend took me to a doctor who actually knew what he was doing, and well, now I am still here. If you are convinced that you have a physical disease, don't allow others to push you off track. Keep searching for the right diagnosis!Best of luck!
    GeoffBaker 18 Replies
    • November 8, 2007
    • 09:07 PM
    • 0
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  • I know my situation is not unique. I have over a dozen doctors, most are specialists. I've actually been "diagnosed" with dozens of things. My medical file is a foot thick. Between my insurance provider and me, we've spent six figures on countless tests and procedures, including surgical biopsies. This naturally led to a lot of "smaller" diagnoses that cover a subset of my symptoms. I really find it difficult to believe I just happen to unfortunate enough to have twenty some-odd conditions across numerous body systems that are not correlated in any way. Contrary to what my former spouse likes to say, this is not psychosomatic. I've got extensive records documenting clinically "remarkable" findings, objectively measured on expensive equipment and analyzed by real doctors. Unfortunately, I cannot find anyone to coordinate all of the information from these pysicians and to proactively seek a unifying diagnosis. (For what it's worth, I believe this is essentially due to the economics of our health care system and medical insurance reimbursements, but that's another topic entirely). I'd love to find a real-life "Dr. House"... someone smart enough and stubborn enough to ban the term "idiopathic" from his/her vocabulary. I don't think such a person exists. I'd love to be wrong. Please prove me wrong! I know I'm sick. I've been sick for a long time. I have a lot of different conditions/syndromes. What I need is to name my illness and prognosis. I need this for a number of reasons, not the least of which is litigation support. But also, it's very personal. I just need to put the whole process to bed. I'm exhausted from seeking a diagnosis for nearly a decade. I've been studying like a medical school student for years, so that I can take control over my own diagnosis. I've found that my medical knowledge just *****s off the doctors. They apparently don't like difficult questions from knowledgeable people. On this site, I'd love to get some professional conjecture on the universe of potential diagnoses that explain the majority of my "conditions". Ideally, I'll find someone willing to actually help me find the real answer. I'm happy to pay for it. For what it's worth, I've been "officially diagnosed" with the following (in no particular order) ... GastrointestinalGastroesophageal Reflux DiseaseHiatus HerniaBarrett's Esophagus CardiopulmonaryHypertensionChronic anemia, not iron deficiencyPneumoniaBronchiolitisChronic Obstructive Pulmonary DiseaseDiffuse Interstitial Pulmonary FibrosisTachycardiaReactive HypoglycemiaPhlebebolith Formation in Pelvic Basin MusculoskeletalCervical SpondylosisSpinous Process Fracture at C7Lumbar Discogenic Spondylosis (Degenerative Disc Disease)Dextrorotary Scoliosis in Lumbar SpineHypolordotic Cervical SpineRetrolisthesis of L5 and Lumbar SpineFacet Syndrome NeurologicSleep-disordered breathingMixed Sleep ApneaObstructive Sleep ApneaReduced Sleep EfficiencyChronic Major Depression Partially Refractory to medication(Possibly secondary to issues with medulla oblongata)Dysautonomia, chronic generalized One theory is that any one or a combination of closed head injuries and/or chlorine gas poisoning earlier in life, led to damage (or somehow de-tune) my medulla oblongata, causing an "idiopathic" autonomic neuropathy, which jacks up various body systems in an unpredictable manner. If so, I have no idea what that is called or how it is officially diagnosed. And what is my prognosis? And how does that explain everything, e.g. degernerative disk disease, or numerous chronic inflamatory processes. Some people laugh at the idea. Can anyone here help me? Please?!! Of course, I will answer any and all questions immediately. Please explain in more detail the chlorine gas poisoning and head injuries you are referring to - when did these things happen? How old are you? Do you smoke - cigarettes or pot? If so, which and how much? DOM
    acuann 3080 Replies
    • November 9, 2007
    • 04:33 AM
    • 0
    Flag this Response
  • I know my situation is not unique. I have over a dozen doctors, most are specialists. I've actually been "diagnosed" with dozens of things. My medical file is a foot thick. Between my insurance provider and me, we've spent six figures on countless tests and procedures, including surgical biopsies. This naturally led to a lot of "smaller" diagnoses that cover a subset of my symptoms. I really find it difficult to believe I just happen to unfortunate enough to have twenty some-odd conditions across numerous body systems that are not correlated in any way. Contrary to what my former spouse likes to say, this is not psychosomatic. I've got extensive records documenting clinically "remarkable" findings, objectively measured on expensive equipment and analyzed by real doctors.Unfortunately, I cannot find anyone to coordinate all of the information from these pysicians and to proactively seek a unifying diagnosis. (For what it's worth, I believe this is essentially due to the economics of our health care system and medical insurance reimbursements, but that's another topic entirely). I'd love to find a real-life "Dr. House"... someone smart enough and stubborn enough to ban the term "idiopathic" from his/her vocabulary. I don't think such a person exists. I'd love to be wrong. Please prove me wrong! I know I'm sick. I've been sick for a long time. I have a lot of different conditions/syndromes. What I need is to name my illness and prognosis. I need this for a number of reasons, not the least of which is litigation support. But also, it's very personal. I just need to put the whole process to bed. I'm exhausted from seeking a diagnosis for nearly a decade. I've been studying like a medical school student for years, so that I can take control over my own diagnosis. I've found that my medical knowledge just *****s off the doctors. They apparently don't like difficult questions from knowledgeable people.On this site, I'd love to get some professional conjecture on the universe of potential diagnoses that explain the majority of my "conditions". Ideally, I'll find someone willing to actually help me find the real answer. I'm happy to pay for it. For what it's worth, I've been "officially diagnosed" with the following (in no particular order) ... Gastrointestinal Gastroesophageal Reflux Disease Hiatus Hernia Barrett's Esophagus Cardiopulmonary Hypertension Chronic anemia, not iron deficiency Pneumonia Bronchiolitis Chronic Obstructive Pulmonary Disease Diffuse Interstitial Pulmonary Fibrosis Tachycardia Reactive Hypoglycemia Phlebebolith Formation in Pelvic Basin Musculoskeletal Cervical Spondylosis Spinous Process Fracture at C7 Lumbar Discogenic Spondylosis (Degenerative Disc Disease) Dextrorotary Scoliosis in Lumbar Spine Hypolordotic Cervical Spine Retrolisthesis of L5 and Lumbar Spine Facet Syndrome Neurologic Sleep-disordered breathing Mixed Sleep Apnea Obstructive Sleep Apnea Reduced Sleep Efficiency Chronic Major Depression Partially Refractory to medication (Possibly secondary to issues with medulla oblongata) Dysautonomia, chronic generalizedOne theory is that any one or a combination of closed head injuries and/or chlorine gas poisoning earlier in life, led to damage (or somehow de-tune) my medulla oblongata, causing an "idiopathic" autonomic neuropathy, which jacks up various body systems in an unpredictable manner. If so, I have no idea what that is called or how it is officially diagnosed. And what is my prognosis? And how does that explain everything, e.g. degernerative disk disease, or numerous chronic inflamatory processes. Some people laugh at the idea.Can anyone here help me? Please?!!Of course, I will answer any and all questions immediately.Hello, and welcome to the club...it would take me a week to tell you everything I know about your pains...first thing is to assure you that this is not in your mind, this is very real. You are not along, and many of us are getting better. It will take you to think outside the box...which looks easy for you since you are willing to work side by side by a doctor and be proactive. Too bad they don't appreciate it.There is a whole new breed of doctors who believe that you are not crazy, that your pains are real and they will work with you, for you.You may want to start by exploring NAET and Bioset.Also you may want to run a search on this very forum and read what people have said about NAET and Bioset.A year ago I was bed ridden with anaphylaxis and dysautonomia...acid reflux, etc...well, my cat just broke my computer...gotta continue later...Fruity.
    Eatafruit78 960 Replies
    • November 9, 2007
    • 04:37 AM
    • 0
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  • To GeoffBaker: what was the rare parasite?
    rad-skw 1605 Replies
    • November 9, 2007
    • 11:41 AM
    • 0
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  • To GeoffBaker: what was the rare parasite?I am not really suggesting you have the same as me. Mine is called "strongyloides stercoralis". It is normally contracted by microscopic larvae penetrating the skin, mostly in tropical areas.
    GeoffBaker 18 Replies
    • November 12, 2007
    • 10:31 AM
    • 0
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  • I don't know what the causes of your problems are. But I know the feeling of not getting a correct diagnosis. In my case it took 18 years before a rare parasite was found. I was told that I would live at most another year without treatment.My list of (mis)diagnoses is not quite as long as yours. When doctors failed to come up with the answers they are supposed to provide, they either told me to see a shrink, or they recommended (as one guy does here), to "think positive" and to "live healthily". I was always sure that a bug was causing my problems, and eventually I was proven right. I fought for long, but towards the end I ran out of energy and was completely broke. I knew I was going to die.But then, a friend took me to a doctor who actually knew what he was doing, and well, now I am still here. If you are convinced that you have a physical disease, don't allow others to push you off track. Keep searching for the right diagnosis!Best of luck!I agree with you!Hypochondria is not in my Vocabulary ;)-Pathogens are a big part on disease...and I don't mean that you need to run to get a prescription for Antibiotics. Antibiotics can't help everyoneFor parasite management, elimination, and prevention, I like to recommend Oil of Oregano.Fruity.
    Eatafruit78 960 Replies
    • November 12, 2007
    • 05:26 PM
    • 0
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  • Thanks for everybody's input and empathy. Ironically, just a couple of weeks later, I have an update! I actually have a new diagnosis from a local neurologist. I'll respond to the questions, because obviously the good people on this site care enough to ask. But more practically, my fundamental question has changed. (Sorry). Having been diagnosed with Multiple System Atrophy (MSA), can you folks help me with a sanity check?Firstly, I should say that my signs and symptoms, and their gradual degenerative nature, seem to fit perfectly with an MSA diagnosis. I have every single symptom. But I'm on the young-side to be diagnosed with MSA, from what I understand. Obviously, MSA doesn't explain everything. But I'm commonly told to give up on my pursuit of a single, "smoking gun" diagnosis that explains everything.Basic Date------------Age: 40Height: 6'0"Weight: 152Gender: MaleRace: CaucasianSmoke: NoYes, I go to a chiropractor. He is also a personal friend. He believes the MSA diagnosis, but he sees no correlation with my spine issues. Chiropractic therapy has been very helpful in relieving chronic back pain and general flexibility. In addition to Scoliosis, I have degenerative disk disease. As much as I'd like to view the chiropractic therapy as a potential cure or fix, I'm resolved to see it as necessary maintenance for flexibility, pain management, etc.I do have GERD and Barrott's Esophagus. A bigger-than-OTC dose of Prilosec keeps it under control. I get endoscopies (and happily, colonoscopies), every two years. They always raise an eyebrow and biopsy some tissue. No cancer yet, though.My general health has been deteriorating rapidly in recent months/weeks. Some days I can go to the gym and lift weights. Other days I can barely walk to the bathroom. On a "good day", I can do 30 pushups. While that's not phenomenal, I'm certainly not out of shape to the extent it could approach explaining my health problems. I live a very healthy lifestyle, given my limitations. On a "bad day", it's like I have the flu. Despite being on large doses of Prozac, Wellbutrin, and Ritalin, I'm often very disoriented, weak, dizzy, and can't concentrate. I've definitely lost a significant amount of cognitive ability.Regarding sleep, I've done two full-night sleep studies at National Jewish, where I'm also a pulmonary patient. National Jewish is widely considered the top pulmonary hospital in the country. Regarding the sleep lab, I have no idea of their credibility. But they study over a dozen patients every night of the week (a sizable sleep lab). In any event, I was diagnosed with mixed sleep apnea a few years ago. I've done C-PAP, Bi-PAP, (with oxygen), (with humidifier), etc. It didn't work. At that time, I had somewhat of an obstructive component. I was 80 pounds heavier than I am now. But addressing obstruction proved fruitless. My sleep now is disturbed by central apneas and the fact that I have to urinate a half dozen times a night.I have poor balance, poor digital dexterity, poor coordination, etc. All of these have been rapidly worsening, along with worsening Parkinsonism. Sometimes, I can't hold a coffee mug without shaking wildly and spilling it. As mentioned before, I have ALL of the commonly listed signs and symptoms, including the urinary stuff, etc. I won't enumerate everything here.As I understand it, MSA symptom on-set in one's mid 30's generally means an accelerated progression, with a typical survival of 2-3 years from the on-set of symptoms. I've been using injectable HGH for almost 4 years. In my personal opinion, I believe HGH saved (or at least extended) my life. There's a little bit of research out there, showing HGH could have a positive effect on MSA progression. I initially decided to take HGH, because I wanted to give my body a chance to heal itself, since medicine couldn't do it. It would be wonderfully ironic to discover that my decision to use HGH for a different reason, ultimately helped manage a disease that I wouldn't learn I had for several years.So... Here's the new question. Is it plausible/reasonable that I could have ALL of the following... * MSA, with symptom on-set at age 34 * Outlived MSA prognosis by 200% so far (due to HGH, prayer, luck, or whatever) * COPD (Emphysema & Fibrosis), as a non-smoker (cased by idiopathic Bronchiolitis and/or chlorine gas poisoning at age 16) * Jacked up spine and related "stuff" (dad & brother have screwed up backs, too). * Various GI problems (related or not to MSA), including Barrott's, rectal bleeding, etc. * Chronic anemia, verified not to be related to iron deficiencyAgain, thanks to everyone for taking your time to help...
    sickt00long 2 Replies
    • November 20, 2007
    • 06:20 AM
    • 0
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  • I don't buy it. You should not take Prilosec. Whatever symptoms you are maskings are nothing compare with the damage you are giving to your organs.The problem is not that you feel discomfort with the acid reflux or GERD-the problem is what kind of chemical reactions are happening and where are the nutrients going when you feel sick or when you take medication to cover up what is simply obscure.Your Liver, Pancreas, Intestines, and Kidneys are part of it all- Lack of nutrients is a huge factor of anything tagged 'degenerative'.Chronic Anemia means that your Pancreas is failing to salvage iron from the blood. Please visit a Doctor of Oriental Medicine who practices NAET.Read about Oriental Medicine and how it deals with GERD and all those other conditions.Don't try to dig for answers at the neurological level...dig down to the foundations...how are you failing to nourish and keep those nerves or whatever strong.Do you take supplements, do you eat junk? do you drink enough water?I think you have pancreatitis and liver stagnation...perhaps you are due for detox.Empower yourself...take charge. No quick fixes- make it happen.Best.Mar.ps: you can also try Bioset.pps: you do have every single symptom of Pancreatitis. Also known as Spleen Yin Vacuity- if I am not mistaken.Do you have fluid in your lungs???Pancreas and Liver are the portals to nourishment and the place where your blood and energy gets engendered.You need to drink more water...on the days that you feel like you have the flu, your immune system is spinning out of control. It is all related.http://tcm.health-info.org/Zang%20Fu%20foundation/spleen.htm
    Eatafruit78 960 Replies
    • November 21, 2007
    • 02:39 AM
    • 0
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  • I am so sorry to hear about your diagnosis. I mean, on the one hand, I know how important it is to finally have a diagnosis- a name for one's suffering. But of course, no one wants to be sick and deteriorating. I wanted to let you know that there's a really great web site called "Brain Talk" out there. It's for people with neurological disorders. I came across it when I googled my own illness, Hashimoto's Encephalopathy (I was diagnosed in April) and have found comfort in this site. I don't think they have a MSA forum yet, but perhaps you could start one. Here's the web address: http://brain.hastypastry.net/forums/I hope this helps!I will keep you in my thoughts and prayers!
    Anonymous 42789 Replies
    • November 21, 2007
    • 06:40 AM
    • 0
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  • I am so sorry to hear about your diagnosis. I mean, on the one hand, I know how important it is to finally have a diagnosis- a name for one's suffering. But of course, no one wants to be sick and deteriorating. I wanted to let you know that there's a really great web site called "Brain Talk" out there. It's for people with neurological disorders. I came across it when I googled my own illness, Hashimoto's Encephalopathy (I was diagnosed in April) and have found comfort in this site. I don't think they have a MSA forum yet, but perhaps you could start one. Here's the web address: http://brain.hastypastry.net/forums/I hope this helps!I will keep you in my thoughts and prayers!Thank you very much! I will check out the site you recommend, and I'll report back if applicable.
    sickt00long 2 Replies
    • November 21, 2007
    • 07:24 AM
    • 0
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