What do you think my problem is?

[Charles]

Hello, doctor.  I am a 32yo male internist practicing in NYC.  I am 5’5’ and weigh about 175 pounds with no significant medical problems.  I don’t smoke, drink or abuse drugs.  I have been suffering from a never-ending nightmare since April 1998.  Since April of 1998, I have been suffering from a chronic upper jaw/maxillary/palatal pain.  It began acutely like a viral URI.  I consulted several ENT specialists and an ENT/dentist in NYC.  None could not figure out what I had.  In April 2000, I began to have new RUQ/CVA/flank deep pain intermittently.  I did not pay much attention to it at first thinking it was probably “gas”.  Finally, in August 2000, my “general dentist” diagnosed that I have an impacted wisdom tooth impinging on my left upper jaw bone.  I underwent bilateral upper wisdom teeth extractions under local anesthesia that month without complications.  Few weeks later, my headache and jaw pain is gone but my abdominal discomfort has become worse and more persistent.  The quality of the pain along my RUQ/flank/CVA is deep and nagging in quality, and sometimes it feels as if someone is pouring salt over an opened wound like a tingling burning sensation.  It is worse and involves the inside of my whole abdomen when I wear my belt and sit down, better if I stand up or lie down.   However I have no problem with my appetite, no bowel movement changes, no nausea or vomiting, no skin lesions or jaundice, and no fever.   I underwent an extensive GI work up in October 2000, including abdominal/pelvis CT/MRI, upper and lower endoscopy, small bowel follow through, all are negative.  I also have normal laboratory analysis of my blood (CBC, chemistry profile, LFT, hepatitis profile, and lytes) and urine.  My serology for RPR is nonreactive.  The GI specialists I have consulted concur that I seem to have a neurologic problem.  Over the past few weeks, the quality and distribution of the pain have changed.  Now I have pins and needles (occasionally pruritic) sensation inside my abdomen (flanks, suprapubic and inguinal areas), along my entire back up to the cervical area, trapezius area, upper buttocks, ischial tuberosities, and proximal upper arms/thighs (right side always worse than left, lower extremity worse than upper).  Occasionally the numbness shoots down my right leg to my foot.  The needles and thorn like sensation feels deep at the subdermal level.  The best way I can describe this strange sensation is that  if you can imagine yourself after getting a hair cut but before taking a bath to wash off all the thorn like little hair stuck onto your skin.  Again it is worst when I sit and better when I stand up or lie supine.  Every time I sit or walk I feel a foreign body sensation at my right lower quadrant/ inguinal area as if two rough surfaces are rubbing against each other.  When I sit with my belt on, my mid and lower back feels like one big piece of sand paper.  There are still no major constitutional symptoms, skin lesions, or motor deficit.  Because of these new developments, I have consulted several local neurologists in December 2000, who ordered a T/L/S spine MRI without contrast which turn out to be all negative.  My objective neurologic exam is nonfocal.  I repeated the previous blood work this time around including CPK, ESR, ANA, RF and Lyme titer.  All of which are negative.  The neurologists I consulted could not come up with a satisfactory explanation for my symptoms.  They reassured me that everything so far is normal.  They ordered an EMG for me and put me on neurontin.  Meanwhile I am still feeling miserable every day and cannot  function properly at work.  Subjectively, my symptoms are worrisome and evolving.  I would like to understand my problems earlier rather than later when it is too late.  Therefore I am writing this letter to see if you can kindly shed some light on my condition.  I hope you understand my concerns.  Any help or advice would be very much appreciated.  I will check the message board for your advice but please feel free to contact me at my email address below.

Thanks,

Charles Shum MD
Dr_shum***@****

[CCF Neuro[P] MD, RPS]

Dear Dr. Shum:

Thank you for your complete history.  I am not sure what to tell you.  The problems seem to be sensory in nature and therefore one suspects somesort of spinal problem.  However, the MRI of the spine, and various lab testings seem to leave you at a dead end.  Since there is almost no abnormality to speak of, I think following is the only thing to do and wait for somesort of definitive symptom change or lab change.  The differential of intramedullary, extramedullary (intradural, extradural) is pretty broad.  However, the MRI and lab testing would unravel most of the differential.  Since it is not pressure sensitivity, per se, I would exclude Issac's syndrome.  May be some SSEP of the lower extremities might pick something up?  

I will respond again if I think of anything.

Sincerely,

CCF Neuro MD

[M.]

I'm not a doctor, but I have pain in the jaw area you describe. Have you considered trigeminal neuralgia or a related facial neuralgia? Obviously, that cannot account for your other symptoms, but as I understand it TN can sometimes occur with multiple sclerosis -- which often has variable and odd sensory symptoms and which does not always reveal lesions at first on the MRI? Have you had an MRI of the brain or only of the spine?

As well, I ordered some TN information from the TN association, and I seem to recall that some of the causes of TN can be a viral demylenating process or something like that. Perhaps you had a kind of virus which caused demyelination of the trigeminal nerve and in another place on your spine or brain which is not severe enough to show up in the MRI and which will get better?

A friend of mine with MRI- proven MS has in recent months had a lot of neuropathic pain which is not explained by any new lesions. So, scans can't reveal everything.

Whatever you do, don't let them convince you it's anxiety. You know your body best -- keep on looking until you find a doctor who will help you find out the answer. Maybe a neurologist or an infectious disease specialist.

[Charles]

Thank you, doctor, for your response.  I will consider your advice seriously and will suggest SSEP to my neurologist as part of my work up.  I will keep you updated on any new development of my condition.  Once again thanks for your input,  It is very much appreciated,  

As for "M", thank you for your input as well.  I agree with you wholeheartedly that some doctors often dismiss a patient's complaint as "anxiety" when they could not figure out what is going on.  This not only insults a patient's intelligence but also betrays his or her trust,  After my ordeal over the past 2 years, I have learned to be a better physician who cares and listens, even more so than before.  Once again thanks for your support.

Charles

[Charles]

Hello doctor.  Recently I have started to take a new antibiotic, Avelox.  I have tried empirically, Augmentin and Ciprofloxacin in the past without any response.  Although I have no other constitutional symptoms, I gave Avelox a try anyway since the drug rep is very eager to give me free samples.  I took it for 3 days and my symptoms are much improved.  I can sit better more comfortably.  Because of this, I have postponed my EMG study.  I will wait and see if my symptoms would completely resolve on this antibiotic.

[tempusedaxrerum]

A related discussion, Sudden onset occipital-cervico-brachial neuralgia was started.