Autoimmune Disease - Searching For A Diagnosis

Please don't copy my work to other websites. TY

Do Not Copy!
Do Not Copy! | Source

By awordlover

This original article is copyrighted by awordlover (Anne DiGeorge)

What's Wrong With Me?

common complaints with autoimmune diseases
common complaints with autoimmune diseases | Source

The Autoimmune Disease Diagnosis

Have you been doctoring for a laundry list of troubling (sometimes disabling) symptoms and still do not have a diagnosis?

You are not alone.

Patients seeking answers to what seems like widely disconnected symptoms are on the rise.

The "blanket" diagnosis of "autoimmune disease" is being made more often in this century than ever before. To actually put a name to the disease is the real task.

For some patients, it just isn't happening fast enough.

People With Autoimmune Diseases

There are over 50 million people suffering with autoimmune diseases. That we know of.
There are over 50 million people suffering with autoimmune diseases. That we know of. | Source

Getting That Diagnosis

Autoimmune diseases are among the most difficult to diagnose because many mimic one another.

What seems like Lyme Disease may indeed be Multiple Sclerosis, Mononucleosis, Chronic Fatigue Syndrome, or Fibromyalgia.

What seems like Chronic Fatigue Syndrome may turn out to be a form of Lupus, Hepatitis, Thyroid Disease, Fibromyalgia, Rheumatoid Arthritis, or even Sinus problems.

So you can see that they range far and wide. There are many tests to go through in order to find a common denominator to get to the root of the problem. And it can be a long arduous journey along a very bumpy road.

One needs to start somewhere and a complete physical examination by a qualified physician (preferably neurologist) is key.

The Testing Begins

First in line is having Laboratory work ranging from basic blood tests to specialty (expensive) tests.

A complete blood count (CBC) will yield a wealth of information that may either confirm or rule out certain conditions. Although there are no blood tests specific to each autoimmune disease, a physician can use laboratory results as a way to rule out, as opposed to confirming a condition.

An example: testing for Lyme Disease which mimics Multiple Sclerosis.

Vitamin D-3 Blood Test

Ask for a blood test for Vitamin D-3. Know your numbers.  You may need more Vitamin D-3, a supplemental vitamin
Ask for a blood test for Vitamin D-3. Know your numbers. You may need more Vitamin D-3, a supplemental vitamin | Source

Importance of Vitamin D testing - by awordlover

Included in those first blood tests should be a specific test for Vitamin D levels.

Many autoimmune diseases have an underlying marker - a deficiency in Vitamin D.

In my opinion, all patients with any autoimmune disorder should be tested for deficiency and if (when) founded, immediately started on a Vitamin D supplementation regimen.

It is not unheard of to supplement with as much as 50,000 IU of Vitamin D several times per week. The dosing should be monitored by a physician with periodic blood tests.

The correct test to ask for (if your physician does not order it) is called 25 (OH)D, also referred to as 25-hydroxyvitamin D.

The first test result will be considered your baseline against any future testing. Your physician will be able to discern if Vitamin D therapy is working and can adjust your dose accordingly.

MRI

3D  MRI
3D MRI | Source

Imaging Studies Are A Must

An MRI (magnetic resonance imaging) is usually ordered around the same time as blood work, if not shortly thereafter.

In the case of Multiple Sclerosis and many other autoimmune diseases, a brain MRI is most commonly ordered first, followed up by three separate MRI's: thoracic, cervical and lumbar. The physician is looking for lesions that would indicate sclerosis.

Always ask for copies of your test results - both laboratory and any radiology tests. A DVD of your MRI is usually provided free of charge upon request. If not, then ask for it.

Worried about claustrophobia in an MRI machine? Ask to have your studies done at an "open" MRI facility.

Keep Your Own Health Records (Forever)

Keep records on a DVD or on paper. Whatever way  is comfortable for you to do it.
Keep records on a DVD or on paper. Whatever way is comfortable for you to do it. | Source
Keep your own records by asking for copies of every consult, blood test, and imaging report.
Keep your own records by asking for copies of every consult, blood test, and imaging report. | Source

Record Keeping

There are over 80 Autoimmune Diseases listed to date.

So many are similar to one another that it can take from a few months to many years to get a correct diagnosis.

By educating yourself with researching on the internet, keeping copies of your own health records (including blood results, MRI, medication, and office visit notes), it will go a long way in saving you time and trouble as you doctor-hop your way to getting answers.

And You Will Doctor Hop

It is inevitable. Very few people find that ideal physician the first time out and sticks with them for years and years.

And no physician keeps a patient to themselves without referring them out to another specialty because, let's face it.......no one physician knows everything about every part of the body.

That's why there are sub-specialties!

You will be referred and referred and referred for consult upon consult. It is a necessary evil to getting that ultimate diagnosis.

Referrals

Referred to consulting another physician
Referred to consulting another physician | Source

Consultations and Referrals

If your doctor is reluctant to refer you for a consult to another physician, neurologist, hematologist, etc. then it is time for you to ask yourself why you are not getting anywhere in your treatment plan.

If you are in the same place (medically speaking) as you were in those first years of doctoring with the same physician, you need to reassess your overall status and decide if you are happy being in that place.

Am I Going To The Right Doctor?

Is a physician of 20 years experience better educated than a physician who has graduated two years ago? That is a loaded gun question.

If the physician of 20 years experience has a thriving practice, is involved in continuing education, goes to seminars, is current in his certifications and continually adds to them - chances are this may be a good fit for you.

If the recently graduated physician of two years experience (who usually "over-displays" acquired degrees and continuing education certificates on his wall), can "show you" that he knows his field, and he is not afraid to offer other physician consults to you, chances are this may be a good fit for you.

But is it?

Which Doctor Would You Choose? (Poll added 11/2013)

If you have a diagnosed Autoimmune Disease, which doctor would you rather go to?

See results without voting

How to Find A Specialist - Personal advice by awordlover

The best scenario is to find a specialty practice consisting of one or more veteran physicians and recently graduated physicians (three to five years experience or more) so that you get the best of both worlds.

I, myself, advocate for teaching hospitals because not only are they current on the latest advances but more than likely, everything you need in the way of testing will be available there.

Here's My Personal Advice:

  • Locate the largest teaching hospital near your home (check your insurance plan for participation).
  • Call and find out who the chief of neurology is. Make sure he/she is on your insurance plans list of participating doctors.
  • Look them up in the Physicians Registry in your state. (See sidebar) Each state has to provide a short biography, where he/she was educated, the year of graduation for each school, current certifications, and past employment for at least the last ten years. There is usually a link on each state's website to check for suspensions and violations.
  • Contact his/her office and ask how many doctors are on his/her service. Ask what the patient to doctor ratio is, or at least how many patients are active in the practice. Ask if you will be seeing the doctor on each visit or the Physician Assistant (PA). Many doctors see patients every third visit and the PA sees patients for all other visits.
  • Ask if there is a clinic and does he/she participate in clinic hours (takes him away from office hours, but might be beneficial to you for visits as well)
  • Ask what kind of schedule he keeps for his private practice (see if these hours are convenient for you)
  • Find out if he is accepting new patients (many physicians periodically shut down their new patient list for a short time until either their patient load decreases or their staffing increases)
  • Ask if he has more than one office that he has to split his hours to accommodate patients. Ask for the location - even though you looked it up on the internet - things do change! Also ask for other location phone numbers to make sure that your info is current.


Keep current about your medical condition with medical journals, periodicals, magazines and internet.
Keep current about your medical condition with medical journals, periodicals, magazines and internet. | Source
Alternative medicine has much to offer
Alternative medicine has much to offer | Source

Alternative Therapy and Treatments

More and more these days, alternative therapy has found its place in the treatment of autoimmune diseases.

I often think of alternative therapy as Comfort Therapy. If it makes me feel better, that's all I'm looking for. And sometimes my physician can't give me that comfort - not with medications, counseling, or conventional treatment plans - and alternative therapy/medicine can.

Massage Therapists and Chiropractors also have their place in the treatment of autoimmune diseases. If it makes you feel better, you do what you have to do for YOU.

Living with a chronic illness is not easy, but it will certainly be a lot better to deal with when you get it diagnosed and learn what you can do to improve your health and quality of life.

I hope this has been helpful to you in making choices in your quest for a diagnosis.

Published 2/27/2012 - Anne DiGeorge

Thank you for not copying this article.

DO NOT COPY
DO NOT COPY | Source

Updated December 4, 2013 with photos and links by Fiona Powers, a member of awordlover's team

Updated 2/2/2014 by Rachael O'Halloran to replace pixelated copyscape logos, update photo attribution and correct format issues.

Updated 5/20/2015 by Rachael O'Halloran to remove and/or replace broken links and correct format issues due to updates on HubPages site.

Note from Rachael O'Halloran

May 20, 2015 - There is a COPIED CONTENT warning on this article and four other HubPages articles by Anne DiGeorge - writing as awordlover. In May 2012, several websites advertising the sale of more than 20 ebooks came to her attention and she responded by filing DMCA's with their host websites. All were ignored.

In September 2013, I took over as her agent and have continued to pursue this with no better results. By end of 2013, there were at least 21 less than reputable parties from three foreign countries using awordlover's copyrighted articles in print advertising, books, videos, health newsletters, blogs - all in an effort to sell questionable medication that purports to cure you, or at best, to make you feel better.

The reason why the stolen content has been permitted to stay online is because these are foreign entities (outside of USA) and because they hide behind an advertising splash wall where the word-for-word content cannot be "seen" by their hosts, Google or any roaming 'bots' that investigate these types of claims.

Results of Legal Advice

Upon consults with several attorneys, they assured me that this would be a very expensive lawsuit (into double digit millions) which most likely will never come to fruition. After more than three years since stealing awordlover's copyrighted material and slapping their own copyright on it, their widespread use of the content will be too difficult to recall out of print. Above all, the countries involved do not abide by the Berne Convention or recognize copyrights of other countries.

If you have seen her original content in books, blogs, advertising and medication handouts, please know that it has been stolen from her.

© 2012 awordlover

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Comments 7 comments

medicinefuture profile image

medicinefuture 4 years ago

well searched hub on auto immune disease diagnosis. very useful and voted up


awordlover profile image

awordlover 4 years ago Author

An important topic that affects literally millions. TYVM medicinefuture :-)


hoteltravel profile image

hoteltravel 4 years ago from Thailand

They claim to have made amazing advances in medicine. But the fact remains that treatment is based on trial and error. Having an insensitive doctor makes the scene worse. No wonder people are going back to alternative therapies. May be they are just placebos. At least they give some relief. Thanks for highlighting the issue. Voted up, useful and shared.


awordlover profile image

awordlover 4 years ago Author

hoteltravel, tyvm for your comments. I apologize for the tardiness in reply. It seems my notifications are not coming through to alert me to comments. Yours just came today for this comment of 2 weeks ago, and I have another from someone else on another hub that was 3 months ago! TYVM for visiting my hubs, and voting. :-)


hoteltravel profile image

hoteltravel 4 years ago from Thailand

I too find Notifications unreliable and not up to date. I either use the comment tab in My Account or Feed to find new comments. This saves me a lot of time.


Tamra foster 2 years ago

This was very well written and informative, but I'm certain one could find more info somewhere on stub


awordlover profile image

awordlover 2 years ago Author

#Tamra foster - the article was not meant to be the final word regarding this subject and most certainly more information can be found on the web (as you say "on stub"). If you had bothered to click any of the links in the hub, you would have found that awordlover directed readers to more information on the web pertinent to this subject.

The reason I am taking you to task is because awordlover left a list of people who put comments on her hubs, who clicked fan mail and sent her nasty emails and who have been stalking her since 2012. Your name Tamra foster (exactly written that way) is on that list.

You choose to masquerade under different names with several HP accounts that you made just to leave comments on a number of awordlover's hubs. A check of your activity shows you only leave comments on awordlover hubs, no one else's. All of the other comments you left have not been published due to profanity you laced them with. This comment is tame compared to the others which is why I published it and decided to address your behavior.

Since the other comments you have left have similar screen names, it stands to reason that you are all of those people.

You can stop stalking of awordlover now. I have charge of this account since her death last May. She can no longer be hurt by you and anyone else you send to Hubpages to comment. Please notice the name on this account now.

But if you feel so compelled to leave such comments like this one and the others which I chose to delete, then perhaps you would do better to vacate Hubpages and find some other people to bother with your comments and emails.

I reported your account. I trust you got my message loud and clear. This will be the one and only publish of your comments on awordlover hubs.

Rachael O'Halloran

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