The New York Times



Timeline of symptoms:Spring 2016 to Spring 2017: Chronic burning and pain in esophagus and stomach. Diagnosed with stomach ulcer which is treated with medication. Pain continues and worsens with eating.Late March 2017: PCP suspects gastroperesis because of continuing unresolved pain and inflammation in esophagus and stomach worsened by eating. Started liquid dietLate April: Pain in jaw on right side of face. Started wearing bite-guard nightly.May: Started feeling extremely tired and weak. Started taking supplements. Had some improvement. Jaw pain worsening.June: Headaches (back of head) every morning. Weakness and stiffness in both shoulders-mostly right. Jaw pain constant despite bite guard. Started taking Tylenol for pain relief.Late June: Loss of symmetry on right side of mouth.July: Headaches continue and get worse occurring in morning and during the day (jaw, back of head, neck, and right shoulder). First noticed the jaw shift. Approximately 3 mm to the left. Unable to chew.July 31: Headaches (jaw, back of head, neck, and right shoulder), jaw pain, slight slur in speech and loss of symmetry in mouth led to making appointment with dentist. Dentist took impressions, referred to maxillofacial surgeon, confirmed misaligned jaw.August 1-3: Headaches became increasingly severe. By August 3, unable to open mouth more than 3/4” to 1”. Loss of mouth symmetry increasingly pronounced. Extremely tired.August 4 Before Noon: Woke up with a severe headache and a pain that extended from back of head to right shoulder. Tylenol unable to help at all. Called dentist and surgeon to try and get some help. Unable to get appointments. Speech slur worsened. Called PCP and got an appointment for the afternoon.August 4 After Noon: Lost feeling in right cheek. Went to PCP. He noted facial paralysis. Sent me to ER. In car driving to ER, right eye closed and would not open.August 4 At ER: Was able to walk in ER. When checking in right hand trembling while I signed, unable to complete sign in. Bottom of right foot became numb. Admitted to hospital.August 5: Jaw pain less. Morning headache less than before. Transient facial paralysis 50-90%. Occasional loss of balance. Unable to use right hand. Transient bilateral pain in calves and biceps. Unable to really tell temperature of room (too hot, too cold).August 6: No jaw pain. Full facial symmetry (first time in over a month) in morning. Mouth and eye began to experience more facial paralysis throughout day. Headaches continue. Regain ability to write. Transient bilateral pain in hip joints, ankles, knees. Unable to really tell temperature of room (too hot, too cold).August 7: No jaw pain. Transient facial paralysis 50-90%. Headaches. Transient ability to write/use right hand. Transient bilateral pain in biceps, shoulders, knees, buttocks. Right eye begins to cross. Unable to really tell temperature of room (too hot, too cold).August 8 morning: Right leg will not hold weight. Right arm weak and unable to write. Slight headache. Right eye crossing-double vision. Facial paralysis 50-90%. Had to walk with walker. Unable to really tell temperature of room (too hot, too cold). Argued with neurologist when he said my symptoms were psychosomatic. Referred for psych consult. Evaluated by psych who did not agree my symptoms were psychosomatic. August 8 evening: Hospitalist said the symptoms were migraines and ordered Imitrex. After Imitrex, felt very hot and tired, regained some strength and dexterity in right arm and leg. Fell asleep for thirty minutes. Awoke with a terrible headache worse and different from previous headaches in top of head, middle of face, behind right eye. Went back to sleep. Woke several times with worsening headache.August 9 Before Noon: Awoke with level 10 headache (top of head, middle of face, behind right eye). Worst headache I have ever experienced in life. Weakness and trembing on right side. Bilateral dulling of sound (like hearing through cotton). Dizzy. Threw up three times. Unable to eat. Facial paralysis 50-90%. Cold compress did not help. Hot shower helped headache. Headache persists despite Tylenol and allergy medication. Discharged from hospital.August 9 After Noon: Able to walk. Headache continues. Buy polarized sunglasses to block light, helps relieve the headache. See PCP-refers me to neurologist. Headache finally ends late afternoon.August 10: Appointment with maxillo-facial surgeon. Extreme headache. Bilateral dulling of sound. Unable to use right hand. Nausea. Facial paralysis 50-90%. Oral surgeon says that misalignment of jaw possibly caused by paralysis on right side of face specific to the nerves in the right side of the jaw. Confirms 1mm shift. Prescribes nightly muscle relaxer and 600mb Ibuprofen 2x/day. After Ibuprofenand muscle relaxers headache goes away.August 11: Appointment with Neurosurgeon. Extreme headache returns. Told me to take full bed rest. Gave me samples of antiinflammatories and a shot of Tordol. Shot of Tordol did not work on the headache and headache continued. Took Tylenol and Ibuprofen 8 hours later- headache finally ended.August 12-19: Facial paralysis 50-70%. Moderate headaches continue, but are less with ibuprofen- Tylenol taken if Ibuprofen not enough. Transient weakness on right side. Dizzy spells. Transient bilateral pain in biceps, knees, and ankles. See eye doctor. He suggests I do not drive until the right eye stops getting paralyzed.August 20: Light makes the right side weak and the right eye close. Mild headache all day.August 21 and 22: Right arm and leg work well. Facial paralysis 10-70%. No pain or unusual symptoms.August 23: Terrible headache. Facial paralysis 50-70%. Weakness in right hand. Take 50mg Zipsor instead of Ibuprofen because of severity of headache. Headache reduced to mild. Regaining ability to sense temperature changes.August 24-31: Only Mild to moderate headaches. Facial paralysis from 0-50%. Regaining strength in arm and leg. Eye becoming more stable.September 1-4: Jaw pain returns. Jaw headaches (back of head, neck and both shoulders) resolved with ibuprofen and tylenol. Facial paralysis 0-30%.After first appt in September with Dr, gastroenterologist, was told to stop taking Ibuprofen because of concerns over ulcers. Within a couple of weeks, facial paralysis returned along with worsening joint pain.October 2017 to January 2018: facial paralysis and joint pain worsens—unresponsive to Tylenol. Headaches diminish.January 15, 2018: Wake up with pain in left knee. Pain unresponsive to Tylenol. Facial paralysis 40-90%January 16-18: Pain in knee worsens until unable to walk without extreme pain. Go to urgent care. Doctor sees joint and knee are swollen prescribes 40mg prednisone for 5 days. Took first dose evening of 18th.January 19-22: Woke up with no joint pain anywhere, 0% facial paralysis, 0% esophagus burning and stomach pain. This was the first time in almost 2 years that I felt “normal.”January 23: Very fatigued.January 24: All joints in the body hurting. Inability to use right hand. Trouble keeping balanced and walking. Esophagus burning.January 25: All symptoms worsening.January 26: Facial Paralysis 70-90%. Loss of function in right hand and arm. Unable to liftright leg for walking. First time losing complete sight in right eye (about 30-90 seconds) and first time losing hearing (ringing followed by muffled sound 30-90 seconds) in right ear.January-March 2018: Symptoms continue to get worse with facial paralysis, joint pain, and loss of function being almost constant. Using 800mg ibuprofen every 6 hours lessens symptoms to provide more functionality when needed (reduces flares and symptoms by 50%) but it also worsens the gastric issues and cannot be sustained for more than a few days. After stopping ibuprofen intervention, symptoms return stronger for 2-4 days. Use this to enable going to conventions, helping daughter sell cookies, and going to family functions.March- May 2018: New--Pain in left jaw and left shoulder accompanied by trembling in left hand—this occurs for several minutes to several hours for 2-3 days per week. Symptoms continue to be worsening on right side. May 10: Begin 10mg Nortriptyline prescribed by Dr, gastroenterologist, in an effort to stop the inflammation and pain that limited eating to only liquid/puree diet.May-June 2018: The fourth week after starting Nortriptyline was able to eat solid food again without pain. During the time on Nortriptyline, the joint pain diminished by 50% and the facial paralyisis and neurological symptoms diminished by 25%.June-November 2018: Since starting Nortriptline, the frequency of joint pain and facial paralysis has greatly reduced. Facial paralysis usually only affects right side of mouth, right eyelid and forehead, and the frequency has been reduced by about 75%. Also, joint pain has diminished greatly. Occasionally, there are “flares” where stronger symptoms come back for one to several days. There is no obvious cause as to the flares, but they generally only occur once or twice per month. ................
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