Is this sensation of my tongue burning related to multiple sclerosis?

4/3/2016

Question:
I was diagnosed with PPMS in 2009. In 2013 in began to have a sensation of a burning tongue. I don't know if this could be related to MS. Sometimes it burns so bad that I can't eat. This has been going off and on for approx. 3 yrs. any other possible causes have been ruled out. Your thoughts would be greatly appreciated.

Answer:
Burning tongue syndrome is rarely caused by MS. This is more often caused by nutritional deficiencies, viral or fungal infections or medications. When MS causes a burning sensation in this region it is usually a burning mouth syndrome with involvement of tongue, buccal mucosa (inside mouth lining and gums) and lips.

Please see your doctor to make sure you do not have a treatable cause for a burning mouth. Most of the tests that need to be done to exclude nutritional deficiencies are not routine tests and may have never been done in your case.

Good Luck

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Mark

2/16/2020 09:45:46 pm

In 98 at the age of 27 I got chicken pox.

I started getting tingling and occasional numbness in my right arm. It was mainly a zone on the back of my upper arm.

I thought it was do to an injury I received in 85 when I hurt my back and experienced a full thickness tear of my rotator cuff. However, as time progressed the numbness and tingling involved both arms and eventually both hands and all fingers.

Doctors suggested physical therapy.

Also during 98 shortly after getting over the pox I developed abdominal pain. Twinges at first which later progressed to constant pain. My bowel condition also included a marked change in consistency...constant constipation.

I tried many different home remedies, high fiber diet, including growing my own vegetable garden to the eventual end of canning four to five hundred jars of vegetables per year to support my new found diet. Nothing helped. As each bowel movement became blacker and more tar-like I eventually had to go back to the doctor after suffering a prolapse.

She informed me to eat more vegetables and wear looser pants. Those suggestions unfortunately did not help.

During the same timeframe I started having bladder issues. At first I would urinate four or five times a night. Then the exact opposite started to occur. It was as though I couldn't empty my bladder. Over a two year time frame I started to get bladder infections. Of course that led to more abdominal pain. Then, almost overnight, constant soft stools and have remained that way for a decade now.

I went back to the same doctor, once again complaining about bladder infections and she diagnosed me with "infidelity." It seemed comical at first, but she was adamant that infidelity was the cause of my issues, so I informed my doctor that my wife is the only person I have ever known. She doubled down on the diagnosis by informing me that infidelity is a two-way street. So I invited my wife to my next doctors appointment. My doctor dropped me as a patient and accused me of stalking her. She later got a divorce and remarried...the doctor, not my wife. I cannot help but wonder who was cheating on whom?!

In the meantime, I taught myself how to empty my bladder by pushing painfully into my pelvis in a downward motion which causes me to simulate the nude statues found in many fountains. It is a painful process, but it has worked for over a decade. If I get my bladder empty enough I do not get the bladder infections.

Now I am struggling with all those issues until about the year 2009. In the summer of that year I breathed in a bunch of mold and fungus in the summer heat working on our pumpkin farm. The allergic reaction almost killed me. The pneumonia took months to recover from and once again my body overreacted.

I developed severe pain in my joints that lasted a decade. I found a new doctor and concentrated on just that issue. His responses to my issues were more than strange. Somehow I was supposed to be faking...everything. I struggled to explain my past unresolved issues which had spread to numbness and intense burning in my legs and feet. Even more strange, I was now experiencing blurry vision, double vision, horrible non-stop ringing in my ears, vertigo, numbness on my chin, cold sensations, and a constant dull pain everytime I moved my eyes.

His diagnosis was "ptsd."

I gave up and stopped going to doctors until recently. I started developing muscle spasms that torture me daily. I do not know if they are responsible for the muscle cramps and severe lower back pain. At times much of my spine hurts. Sometimes sitting helps, other times walking. I am afraid to tell my doctors how much pain I am in. I have anxiety about being falsely accused again.

Furthermore, sometimes I fall because my balance is now perpetually effected. In the meantime, everything has worsened.

My esophagus is affected. I cannot swallow and often choke on food to the point where I expel food and liquid in an effort to clear my esophagus and protect my airway. I'm not vomiting as it never makes it to ky stomach. It scares my family when this happens, especially my youngest daughter.

I found a new doctor in Indianapolis, over an hour away, thinking maybe rural doctors are there for reasons beyond logistics and a city doctor might posses more skill.

It took a full hour just to explain and place each of my ailments into context. My new doctor's immediate response after listening for an hour was that I needed psychological assistance. As it turns out he is more skilled than the others! I am now used to these type responses from my doctors and I realize that slandering someone in order to hide your incompetent actions is probably a very human action. However, the legacy from that one doctor doing that to me is as persistent as my illness.

So, do to the insistence of my wife and mother, I am not allowed to give up, and demanded an MRI. The doctor politely refused and sent me to a urologist instead. After an ultrasound they discovered

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