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Hemiplegic migraines, CRPS vs ms or autoimmune disease

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.
Most appreciative,
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

1 Responses
Avatar universal
hi there sounds like u have a load of problems your having to deal with.i sorta know ur pain. i had a brain tumor removed back in 2000.took two years to get over with.finally went back to work at our local car dealiship as a mechanic. i lasted about 2 more years and started having headaches really bad. started visiting nero drs and they started the meds for my symptoms..none of em worked.now 12 years later im disabled from the pain in my head.basicly ran outta drs ha. i started feeling weird one day and went to er. i was going in to adrenial crisis. they saved me thankgoodnes. finally got in with an endrocroniligst. btw my spelling ***** ha. he done some tests and found my patatuary gland was damaged in surgery. ur pat gland is ur master gland that controls every thing..being it dosent work anymore my adrinal glands are dead tyhroid is dead. had thyroid removed and now take meds for that..ive gained a hundred pounds in one year due to taking steriods for adrineals..now i have taken on a genetic clotting disorder so im on blood thinners for ever.along with sterioids.last year i had multipal blood clots come up in right lung stayed in hospital for 9 days with that.about 2 months ago i started getting sick went to er and my magniesum level fell out to barely readable. admitted to hp 3 times for that in last month..so now im on a big mag dose of meds..for the pain i see a pain treatment dr that has me on oxycontin 30mg twice a day and perkaset 10 4 times a day along with neurontin valume kolonipin furioset i take a shot of immatrex as needed but only allowed 3 shots a month..this may sound weird but one thing that helped me big time was changin my bed..wife and i bought a sleep number bed..its two seprate mattress but there put togethr. i dont even feel her move unless she kicks me or jerks the blanket off me haha.i have sleep apnea and am on a cpap machine also..that is my other savior.bed and cpap machine..love love love those two. dont have kids because of all the surgerys ive been thur  as my wife would say im shooting blanks now ha.but thas another story.she is a nurse and my mother is a nurse brother is an emt so im in good shape for as someone takin care of me..oo also some of the steroids has cause 6 discs in my back to kinda rot. so i cant walk far or stand up long.have to use cane..im 35yrs old 6feet3 340pounds..very hard to get around after gaining a hundred pounds..i cant exert myself or im sick as a dog so loosing weigh is hard for me.actually i just got home from er cause my blood suger was 600 stayed 2hrs to get it down.i no my message may not have helped u at all but at least u no there is someone else out there with some of ur symptoms...if u wanna holler back and chat bout stufff feel free..i enjoy talkin and hopefully making u smile once or twice at least haha.just gimmie a holler if u want..good night and god bless u
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