I am a 51 year-old registered nurse with a background in critical care and perianesthesia nursing. I am absolutely exhausted and frustrated trying to find someone who can put the pieces of my puzzle together. I appreciate any clinical expertise you have to offer as well as any recommendations. I would like to regain my health or at least prevent further deterioration. I am married, the mother of 2 daughters, 22 and 27 years old. I have a 3 year old grandson. Prior to my health deteriorating I was very active, 120lbs,exercised, arts and crafts, gardening, travelling, flea markets, theater, movies, church, friends, after school activities with kids, volunteering, etc... My quality of life has been progressively worsening. I have been a part-time student for several years as I recognize I may need to prepare for an alternative career due to health issues. I recently had to take a leave of absence/FMLA only to find out my for-profit employer never enrolled me in the hospital provided benefit of STD or LTD. I am between a rock and a hard place.
cks “Desperately Seeking a Diagnosis”
I will start with my MRI report from 9/12 which was done at my request for worsening headaches, since my last one was in 2008. There has been interval increase in punctate nonspecific white matter foci of FLAIR hyperintensity seen specifically in the left frontoparietal centrum ovale. Minimal periventricular FLAIR hyperintensities also seen.
Past medical history:
Migraines/headaches since childhood
1986- 25 yo Hemiplegic migraine with prolonged vasospasm leading to TIA mild r arm weakness, mild word finding difficulty, was on oral contraception was not informed to discontinue
1997-Passenger in auto accident resulting in lumbar annular tear, widespread pain, muscle weakness, fatigue, maybe fibromyalgia, worsening symptoms over several years including irritable bowel, irritable bladder
2007 -small lumbar5- sacral1 herniation
2008- Diagnosed with hemochromatosis, had portacath placed for phlebotomies and developed pulmonary embolus 7 days postop , at which point I was diagnosed with Protein S and Leyden V, and on Coumadin.
2009- off Coumadin as per hematologist; “only need anticoagulant if having surgery in the future”
2009-2010- worsening headaches, partial loss of vision in right eye for approximately 3-4 hours, eye exam normal(“it’s migraine-related”), weakness on right side, paresthesias, occasional brief episodes of word finding difficulty and expressive aphasia, some short term memory loss, paresthesias left arm, mixed urinary incontinence, urethral sphincter weakness
Sept 2010- lung nodule in lingual which was monitored had TB test and Flu shot developed abscess in right nostril with mild facial cellulitis put on course of antibiotics and report CT scan of lung no nodule, labs negative
December 2010- bunionectomy and joint replacement, postop physical therapy, topamax for migraines worked well
Early spring 2011- developed complex regional pain syndrome of right foot, tried Neurontin and Lyrica and tongue swelled, up lost sense of taste and face and arms dull sensation, lumbar sympathetic block injections with some relief; icy sensations shooting in facial area, worsening TMJ, mild left eyelid droopy, increased stress incontinence
Summer 2011- followup for IBS and rule out ulcer, abdominal pain, tachycardia particularly after meals, difficulty swallowing, choking on liquids; endoscopy- swallowing motility problem, achalasia, GERD, large hiatal hernia; “something wrong with your autonomic nervous system”.
Winter 2011- topamax stopped weird symptoms ? reaction in combination with other meds, increase in dropping and knocking things over
Spring 2012- saw new neurologists, (making this the 4th one), for migraines/headaches 5days/week, increased difficulties with concentration, memory, vision, speech, balance, irritability, worsening sleep disorder, CRPS. Showed him MRI from 2008 and discussed symptoms said it was not MS. Didn’t order another MRI. Focus was on migraine management- referral to partner for Botox injections which I declined, and Zofran and Zonegran prescribed- (felt too foggy and headaches worsened so I stopped med), tested for Anderson-Fabry’s disease-negative.
Spring 2012- mammogram and breast ultrasound 3cm lymph node tail of right breast, also intermittent axillary and inguinal lymph node enlargement, increased fatigue, night sweats, no fever. Saw breast surgeon who felt it was due to inflammatory process and referred me to rheumatology.
Seen 3 rheumatology workups over past several years, last one about 18months ago- nothing definitive, probably fibromyalgia. Labwork-intermittent protein C elevations; Sed rate, ANA, Lyme’s disease, Sarcoidosis, and Scleroderma negative. All routine labs normal.
May 2012 Juvederm injections
June-Sept 2012 worsening pain in right foot/leg, increased fatigue, weakness, dizziness, visual and speech difficulties
Sept 7, 2012 significant vascular changes in right foot along with increased paresthesias, burning, icy pain, cramping calf pain, extreme fatigue, weakness, irritability
Sept 10,2012 saw primary Tramadol, Cymbalta, MRI,
Sept 12, 2012 R lumbar sympathetic block and L epidural steroid injection; could not move right upper leg due to pain and weakness “I grazed your L2, IV Decadron and Flexeril, small urinary leakage
Sept 13, 2012 MRI of Lumbar spine done
Sept 17th find out MRI result and Lumbar MRI- 15x13x7 left paracentral herniations of l5-S1 with S1 nerve impingement. Saw hematology, had phlebotomy, need CT of chest, abdomen, pelvis for lymphadenopathy.
Sept19, 2012 repeat sympathetic block and epidural by different MD did well, he asked if I had an EMG recently- scheduled for October
Sept 24, 2012 saw ortho recommended microdiscectomy
Oct 1, 2012 see neurology for abnl MRI