Nothing’s Wrong with You- Failure of Healthcare with Auto-Immune Disorders
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I have worked my entire adult life in healthcare, first as an X-ray tech and then as an Occupational Therapist. In that time I’ve been privy to the interactions between thousands of patients and their doctors. Of course during that time I have had my own interactions with doctors as well. Through all of those doctor-patient encounters, an ugly truth emerged: If doctors don’t know what’s wrong with you, then too often they conclude nothing is wrong with you.
If you think I am jaded, bitter or cynical, just do a little homework. Go to the internet and search for forums or message boards for people with most any auto-immune or connective tissue disorder.
Sebastian Napping on Vacation
What are Auto-Immune and Connective Tissue Disorders?
Connective tissue is known as our “cellular glue” that provides structure and support for the body tissues, including organs. Connective tissue disorders are sometimes genetic. Sometimes the cause is unknown. Connective tissue disorders include Scleroderma, Sjögren's syndrome, Rheumatoid arthritis, lupus, Marfan syndrome, Ehlers-Danlos syndrome, and Osteogenesis imperfecta.
The immune system protects the body from infection and disease. In auto-immune disorders, the normal immune response goes awry and the body attacks itself. Auto-immune disorders can affect the whole body, or can be more localized. Auto-immune disorders tend to run in families. The prevalence is higher in women, particularly Hispanic, African American and Native American women.
Localized Auto-immune disorders include Multiple Sclerosis, Type 1 Diabetes, Hashimoto’s thyroiditis, Crohn’s disease, ulcerative colitis, celiac disease, and Addison’s disease. Many experts believe many cancers to be auto-immune in nature.
Systemic auto-immune disorders include lupus, scleroderma, Sjögren's Syndrome, rheumatoid arthritis, and Guillain-Barre Syndrome. All of these except Guillian-Barre are considered to be both connective tissue disorders and auto-immune disorders. Many experts consider Fibromyalgia to be a connective tissue, auto-immune disorder.
It is beyond the scope of this hub to define these various disorders. You can learn more from following the links above.
Some of My Favorite Resources
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The Long Road to Diagnosis
Many of these auto-immune and connective tissue disorders have many things in common symptomatically. The other thing most of them have in common is that they are difficult to diagnose. There are no specific, definitive tests for many of these disorders, and they are diagnosed by exclusion, meaning ruling out the most likely other diagnoses, also known as differential diagnoses. When there are no definitive tests, the history and patient report of symptoms is even more crucial in diagnosis. Herein lies the snafu. Patients who are ultimately diagnosed with these disorders report what often turns out to be years of reporting symptoms that are essentially dismissed by doctors. Multiple Sclerosis for example sometimes takes 10 or more years to diagnose. To make matters worse, it is not unusual at all for a person diagnosed with an auto-immune disorder to subsequently be diagnosed with multiple auto-immune disorders.
Patients diagnosed with auto-immune and connective tissue disorders overwhelmingly report their frustration with doctors’ attitudes. Many have seen countless physicians, only to be referred to derogatorily in their record as “doctor shopping”. Worse, they have multiple mentions in their medical records of being “symptom magnifiers” and having “multiple psychiatric issues”. Yes, sad but true, when doctors don’t know what’s wrong with you, they deduce nothing is physically wrong with you, and therefore it is psychological.
Many patients with auto-immune and connective tissue disorders have shared their stories with me of their frustration in their journey to diagnosis. I have also shared in frustration with many patients yet to be diagnosed. Patients whose stories, in my experience point to the likelihood of an auto-immune and/or connective tissue disorder. In part I say this because I have ruled out common and not so common musculoskeletal causes of their extremity complaints.
Eventually, most patients with auto-immune and connective tissue disorders finally get a diagnosis when they are so sick that their diagnosis is approaching “no brainer” territory. At this point those doctor shopping, symptom magnifying patients with multiple psychiatric issues were none of those things, but merely “right” all along that something was wrong with them.
Book Resources
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Living Well with Autoimmune Disease: What Your Doctor Doesn't Tell You...That You Need to Know
Price: $8.56
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Living Well with Chronic Fatigue Syndrome and Fibromyalgia: What Your Doctor Doesn't Tell You...That You Need to Know
Price: $4.00
List Price: $14.95 |
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Living Well with Hypothyroidism: What Your Doctor Doesn't Tell You... That You Need to Know (Revised Edition)
Price: $7.16
List Price: $15.99 |
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A Woman's Complete Guide to Natural Health (Avery Health Guides)
Price: $4.90
List Price: $19.95 |
Western vs Alternative Medicine
Unfortunately, the frustration does not end with receiving a diagnosis. In my opinion, Western Medicine not only fails in expeditiously diagnosing patients with auto-immune and connective tissue disorders, but also in the treatment of these clients. The problem lies in the essence of what Western Medicine is, in my opinion.
What happens when you go to a doctor? They make a diagnosis based on your symptoms and prescribe drugs accordingly. They may occasionally recommend ice for injuries, rest, weight loss, but on the whole, they prescribe drugs. Their toolbox is sparse unless you consider the world of pharmaceuticals a bountiful harvest.
Alternative Medicine disciplines consider symptoms to be important clues to imbalances in the body. Alternative Medicine disciplines also view diseases to be due to imbalances, caused by nutritional deficiencies and toxins in the body from the environment including foods and beverages. Drugs are also toxins. In this way of thinking, Western Medicines’ primary weapon in the arsenal, pharmaceuticals, may cause more harm than good.
About Alternative Medicine
- Find an Herbalist | American Herbalists Guild
Learn about herbal or botanical medicine. - National Center for Homeopathy - Home Page
The National Center for Homeopathy is a non-profit membership organization dedicated to making homeopathy accessible to the public. - Naturopathic Physicians Are Primary Care Providers - Association of Accredited Naturopathic Medical
Naturopathic Physicians Are Primary Care Providers - Association of Accredited Naturopathic Medical Colleges. Doctors of naturopathic medicine (NDs) are trained as primary care providers and, as such, their scope of practice may include... Nutrition
What Now?
Of course there are no easy answers. I would encourage anyone who feels that something is wrong with them and they are not being heard by their doctor, to hang in there. Bolster yourself and take action.
Educate yourself as much as possible on detoxifying your body. I started this process about 3 1/2 years ago. I also started seeing an alternative medicine provider shortly thereafter. I had multiple chronic health diagnoses and was prescribed more than a couple medications. I strongly felt that if I didn’t take action and make some changes, I was headed for some type of auto-immune or connective tissue diagnosis.
If you have been diagnosed with an auto-immune or connective tissue disorder, and you are not satisfied with your current medical care, read and research as much as you can. Go to forums for these conditions. Find a book that explains things in a way you can understand. Mary Shoman presents a great balance of Western and Alternative Medicine resources in her books.
If you feel Western Medicine healthcare has totally failed you, consider seeing an Alternative Medicine provider such as a Naturopath, Herbalist, Homeopath, Acupuncturist, Chinese Medicine provider, or Chiropractor. Yes this kind of care will likely not be covered by your healthcare plan. Take out a loan. You’d do it to buy a car wouldn’t you? Just do it. Choose you.
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Healthcare for Auto-Immune Disorders in the News
- Existing drug also good in type 1 diabetesUPI24 hours ago
DALLAS, Dec. 8 (UPI) -- U.S medical investigators say they've determined a drug used to treat autoimmune disorders might also aid patients recently diagnosed with type 1 diabetes.
- MedPro Rx Accepting Applications For 2010 Education Is Power ScholarshipsdBusinessNews.com1 second ago
RALEIGH , N.C. – Nancy McFarlane, president of MedPro Rx, Inc. ( www.medprorx.com ), a provider of specialty pharmacy services to clie nts with chronic illnesses who need clotting factor, IVIg and other medication , has announced that applications are now open for their “Education Is Power” scholarship program.
- Roche to present data on its Herceptin, Avastin and T-DM1 studies at the CTRC-AACR SymposiumNews-Medical-Net9 hours ago
Roche announced today that new 5 year follow-up data from two pivotal studies with Herceptin(R) (trastuzumab) in early breast cancer; key results from a study of Avastin(R) (bevacizumab) in the second-line treatment of advanced breast cancer and strong data on the use of trastuzumab-DM1 (T-DM1), the first antibody-drug conjugate in development for very advanced HER2-positive breast cancer, will ...
- New tool in fight against autoimmune diseases, blood cancersScience Daily6 days ago
Scientists have described a new, highly pragmatic approach to the identification of molecules that prevent a specific type of immune cells from attacking their host. The findings add a powerful new tool to the ongoing search for potential treatments for autoimmune diseases, such as multiple sclerosis (MS), as well as blood cancers, such as myeloid leukemia.
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Comments
Excellent hub. Is this your hub #5 in hubmob weekly.
Thanks for the high praise lyricsingray and soni. Yes Soni, this is #5 for the HubMob. Health/healthcare is obviously a topic that gets me going. How many are you shooting for on this one?
Great information, RM. I can definitely relate all too well to doctors not knowing what's wrong with you and not caring enough to do more. As you know, I recently found out that I have a hypothyroid, possibly Hashimoto's, and so I'm now entering the world of auto-immune. Thanks for this great hub.
LR thanks for your support of my work. Get Mary Shoman's book!!
Thanks rmcrayne, I as most of the other comments can relate to your hub. I too have begun to take charge of my own health, and do exhaustive research on the Internet. I begun a few years ago looking into Alternative medicine, and has had success in treating a variety of ailments for me and my family. For instance years ago I stopped taking my children to the doctor for an ear infection. I will share what I did in an upcoming hub. Very good hub.
Good advice. My family has had similar problems with doctors. They usually give up and say don't come back! Will get Mary Shoman's book.
Thanks for your support freta and judy.
freta, look forward to your hub. Can't have too many hubs on non-pharmaceutical cures!
judyd Mary's thyroid book was like a lifeline for me. She has a website for thyroid that probably has info on AI or links. I think it is thyroid_info.com.
All too true. I'm one of those that medication helps -- my maintenance pain medication has made a 100% better change in my life and it's gentle enough that I can go on using it indefinitely. I refused any opiates for it knowing those would cease to be effective over time and require greater doses. Same for most things but not for my tramadol.
My goal isn't to eliminate my medications. It's to improve my function. I'm aware now of all the different chronic health problems I've got and everything you've written here is so painfully true.
One treatment that always has helped but is so much harder to get is massage. Unless I have someone in my family willing to give me massage on bad days, it's not available. I can't afford it out of pocket. Same with chiropracty though I know maintenance chiropracty can help a lot too with my spinal problems and the pain.
So I'm glad to have finally gotten some real treatment after the whole exodus -- but can't count the times ignorant new primary care doctors look at the prescriptions I got from specialists and halve the dose (cutting my function to much less than half) because it's a high dose and they're not used to dealing with chronic pain -- or willing to accept that it IS chronic and not going to Get Better or Go Away.
They're focused so much on short term treatment of acute conditions that there's very little research and work on taking care of anyone with anything chronic. That was Kitten's view of it -- when it's permanent and real as a limitation they have no idea how to handle it. They hate being wrong and will defend their misdiagnoses right up to the wall until enough specialists beat them down.
Only pain clinics ever actually admit pain itself causes problems and is a problem and not just something you're supposed to suck up till you "get better" which will never happen.
Thanks Robert for reading and commenting. I was especially interested in your take on this particular hub.
You'd think when your team finally got things right, and you were pleased with your day to day pain management and function, that it would all be smooth sailing from there! Go figure. Some docs never master "the art of practice".
Makes me angry that we can't have things like massage and chiropractic covered in healthcare plans.
Very informative, you spent a lot of time putting this together. All inflicted thank you.
Wow.....That is such useful stuff. Thank you for sharing, so that others may suffer less.........
Thanks Harvey for the compliment. It really means a lot coming from you.
Thanks Christy for being my cheerleader!
Had another question-would you suggest these medicines for Hep C?
Lyrics thanks for reading! The choice I’ve made for myself is Alternative Medicine all the way. Western Emergency Trauma Medicine is a great thing. I’ll continue to get routine lab work, PAP smear, mammograms etc. Past that, I don’t think I’ll ever go back to relying on Western Medicine. Maybe, big maybe, if I run completely out of money and have to rely solely on military TriCare, I’d go back. So, for me personally, I’d go Alternative Medicine for Hep C, cancer, whatever.
Alternitive medicine can be a great tool, if AND ONLY IF YOU ARE SMART ABOUT IT, DO YOUR HOMEWORK, read up on it, and consult a LICENSED/CERTIFIED professional. I take colletal (mispelled) silver at least 3-5 times a week and more so when I am sick/getting sick.
Great insight into auto immune/connective tissue diseases, thanks for sharing that. Hub On.
Franki
Thanks for reading and commenting franki. I started reading and dabbling with detoxing my body. It was overwhelming, trying to help myself get healthier, but not really having good direction. I started out with a chiropractor who was fantastic in identifying my needs and dispensing whole foods supplements by standard process.
nice hub In this fast moving world we all like to avoid these doctors but helpless. Well good written Keep writing!!!
Thanks for reading and commenting neysajasper.
















lyricsingray says:
3 months ago
I know this all too well-really great write! Thanks!