The Patient Maze


Image courtesy of cooldesign/

NOTE: Although this post will remain on Kali’s Musings, it has been reproduced and future BMS posts will appear on A Burning Journey. Please check it out if you are interested in more about Burning Mouth Syndrome.

I have been reading about the Affordable Care Act snafus and victories with great interest. Here is a site that has very good coverage: Summary of the Affordable Care Act. I don’t begin to guess how this will all shake out, but from personal experience as a sufferer of Burning Mouth Syndrome, I can tell you that healthcare was a maze, to begin with, and an expensive maze at that!

I have been approached to do an interview about Burning Mouth Syndrome, and in preparation for it, I began combing through my three Pendaflex folders bulging with medical forms, blood tests and most of my records since the syndrome began for me again in 2008. (This is my second time around) I am a fairly organized person and had kept a decent record of procedures I had gone through and meds I had tried, but just to make this interview easier, I spent time putting that all into a spreadsheet.

It is 10 pages long…in double-sided printing.  I could use it as a brochure!

Each page is a record of the plethora of medical professionals and specialists who tried to rule everything treatable out before coming up with the  diagnosis of “Burning Mouth Syndrome.” Yes, this is what you call this continual burning and tingling of the tongue, palate, throat, and gums when nothing else has panned out as a cause. There is no definitive cause in primary BMS and there is currently no cure.

What did we rule out?

  • Thrush
  • Sjogren’s Disease or other Immune System disorders
  • GERD (Acid Reflux)  (3 different specialists, an endoscopy, a 24 hr PH test, and the utter failure of all GERD medications finally ruled this bad boy out)
  • Post-Herpetic Neuralgia
  • Trigeminal Neuralgia
  • Vocal Chord paresis
  • Brain Tumor
  • Vagus Nerve Impingement
  • H-Pylori Bacteria
  • Hormonal Imbalance
  • Vitamin Deficiencies (D3, B12, etc. – all of the usual suspects)
  • Infection/Inflammation
  • Muscle Malfunction in Throat
  • Malfunctioning Superior Laryngeal Nerve
  • Malfunctioning  Glossopharyngeal Nerve
  • MTHFR Gene Mutation
  • Malfunctioning Occipital Nerve
  • Impingement on, or malformations of the maxillofacial, cranial and spinal areas

When all of that is eliminated…you get Burning Mouth Syndrome as a diagnosis. By the way, all of the tests and appointments necessary to get where I am today have taken over five years in this go around, and four months in 2006 when it first occurred.

Thank heavens my husband worked for companies that provided good medical insurance. I often think of what I would have done if that hadn’t been the case, and the answer is simple. Suffer and fear the worst, because the cost would have been crippling and that doesn’t even include all of the medicines that were tried without success.

I have heard many pundits say that the system itself is simply too expensive and that in order to make any systemic changes, we will have to address that first. I fear that may be impossible unless some powerful person puts his or her personal political capital on the line to do it.

Meanwhile, we flounder, and in the case of many of Americans, we flounder in pain.


UPDATE: September 2014

There is a petition that you can sign, asking researchers to address Burning Mouth Syndrome. Be sure to leave a comment, because the intent is to communicate to researchers how widespread and life-changing this syndrome is for us.


Let’s see if we can move the needle on this, shall we?



3 thoughts on “The Patient Maze

  1. This is all too true! If you think this is bad, wait until you fall into medicare rules. Very strange. It seems like your Dr. is not in charge anymore. Of course all insurance is like that too. Great story.


  2. I have had “Burning Mouth Syndrome for 13 years. Quite often I would prefer to be dead than to face another day of excruciating pain. My pain extends to my chest and at times it feels like I can’t breath due to the pain. Will it take some famous celebrity to get this disorder before some serious research is done. Please someone HELP!


    • Joyce, you are not alone. I see women on the BMS Support Group on Facebook who are dealing with over twenty years of pain. Are you on medications for both the nerve pain and the anxiety? Chronic pain does some bad things to our bodies over time by raising cortisol and blood pressure levels and anti-anxiety medications can help a great deal. Keep looking for things that help you cope, and try to reduce the stress in your life in any way you can. These are the things that seem to make the most difference to the long time sufferers. We have to get into the mind set of people who deal with chronic pain, even though ours may disappear one fine day as mysteriously as it appeared. Wishing you luck, and do check out the support group on Facebook. There is a lot to wade through there, and you won’t always agree with people’s comments or outlooks, but you may find just the coping mechanism for you or connect with others who truly understand what you are going through. Hope to see you there.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s