Im desperate for insight, my scans come back normal? My labs come back normal.
I’m 35 year old mother of 4 under 18, this is destroying my life.
Undiagnosed and complicated all over the place symptoms.
Debilitating effects of onset intensifying symptoms that present in a relapse and remitting fashion of electrical sensations, all over fatigue,
Something inside me has been internally causing these surges of same type of symptoms to happen to me over and over last several years. Each time stronger and with new symptoms, It has been slowly and steadily stealing my life away from me and those I love.
notes from last appointment below my list of symptoms,
*Loss of energy, if I do anything feel my energy being sucked away from me quickly,
* acute pressure headaches n forehead with electrical shock type sensations.
* Left temple and side of forehead looks sunken in compared to the right side.
*perfect vision up until 6 months ago.
*Eye pain, pushing pressure behind left eye worse when walking. consistent double and blurry vision.
Eyes do not want to work together reading.
Attacks of impaired color perception “graying” suddenly appearing in my field vision. Difficulty seeing in low light. when first waking up I under reach for objects for first 45 minutes.
*Certain auditory tones cause extreme aggravation and irritation.
*Random chest pains not severe, spreading warm sensations across the left side of my chest
*Veins in my hands sink beneath the skin last couple weeks consistently, leaving an indent
*Severe stabbing tearing pain left side of spine around lower rib cage wrapping around, made extremely worse with movements like laundry folding or dishes.
* Entire pelvis numb with hip pressure, Started in March in and out when sitting or lying down. end of April became constant no matter position last 4 days it’s gotten a little better very much still there.
Went to ER onset of constant and couldn’t sleep, however was told to follow up with my neurologist no tests could be done at ER, other than the pregnancy test (negative)
*sporadic pulsing type spasms in my feet, legs, groin, thighs. Unsure if it’s my veins, nerves or muscles. Buzzing band around calf just below the knee.
*Last few months have severe involuntary tightening of calf muscles painful to walk, tightened state lasts for few days at a time.
*Both ankles top of feet have been severely numb since 04/30, left side is much worse. Limping to walk
*Electrical vibrating sensations that have a mind of their own head, neck, back, feet and legs.
*Indenting on left side of my forehead and temple believe this is not normally my appearance
*Visible Beau's indent lines on 6 of my fingernails.
*Burning stabbing pain with loss of feeling between shoulder blades mid back started 6 years ago, very uncomfortable. Stabbing pain centered at the spine at my bra line. spreads out to my left rib cage. Last couple weeks spread further to the side of my rib cage under arm; Numbness on my right side of spine doesn’t extend out very mild in comparison.
118/76 (BP Cuff Location: Left arm, Patient Position: Sitting, BP Cuff Sizes: Adult, regular)
71.7 kg (158 lb)
Small fiber neuropathy
1. Small fiber neuropathy
Pelvic pain, left hemibody numbness, left leg weakness
Abnormal labs: ANA (1:40),
Normal labs: TSH, CRP, 2 hour glucose tolerance test, Lyme, SPEP, hemoglobin A1c, anti-double-stranded DNA, SSA, SSB, thiamine, B12, rheumatoid factor, ESR. In 2015 her cryoglobulin level, C3 and 4 complement levels were normal as well as an anti-RNP antibody and anti-phospholipid profile. Previous to that her ANA was also normal as was her CCP antibodies.
T spine: MRI of her thoracic spine performed on March 1, 2017 was essentially normal. No clear cause identified for her back numbness.
L spine: MRI June 30, 2017 which showed mild DJD but little else.
Brain: 2.26.18: Normal
CT angiogram head and neck: 3.26.18: Normal
Skin biopsy: normal.
Of note, she was seen by **** on April 11, 2018 for a complaint of diplopia in each eye, independently. He found monocular diplopia in each eye which he felt was reactive in etiology. Initially he found evidence of a mild exophoria which might explain mild blurring or difficulty fusing images. He is unable to find any specific neuropathic cause for her symptoms.
Of note she was previously seen by rheumatology who recognized her labs are normal but that she had features concerning for connective tissue disorder such as lupus or antiphospholipid antibody syndrome.
DTRs: 3+ and symmetric in the lower extremities; 2+ and symmetric in the upper extremities
Toes are down going to plantar stimulation. +Inconsistent Hoffman's on the left
Sensation: temperature sensation and pinprick are decreased to just above the ankle.. In the upper extremities temperature and pinprick is decreased to the mid forearm, L > R. Her vibratory sense light touch and proprioception are all intact. She has a patch of sensory loss mainly to pinprick and temperature from proximately T2-T10 on the left back, with extension to the left flank.
At least 5 years of numbness in her back accompanied by livedo reticularis, myalgias, dry eyes, generalized fatigue, depression, and now, pelvic pain. Her symptoms are consistent with a small fiber polyneuropathy although her skin biopsy was normal. (this can be seen in early small fiber polyneuropathy). Small fiber neuropathy may be a minor component of her symptoms or indicative of a systemic problems but it in no way explains her overall presentation.
While she does have B/L LE hyperreflexia and possibly a Hoffman's on the left, which could imply a cord stenosis issue, her wide range of varied and transient symptoms may be more consistent with a diagnosis of fibromylagia.