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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.

Last appointment,

118/76 (BP Cuff Location: Left arm, Patient Position: Sitting, BP Cuff Sizes: Adult, regular)
71.7 kg (158 lb)
24.75 kg/m2

Problem List
Subjective tinnitus
Small fiber neuropathy
Livedo Reticularis

1.  Small fiber neuropathy  

Chief Complaint:
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.

3 Responses
1756321 tn?1547095325
I read an article from the Mayo Clinic stating that the most common cause of monocular double vision is dry eye syndrome. That is interesting as Sjogren's syndrome (one of the few autoimmune diseases associated with livedo reticularis) causes dry eyes. Negative SSA and SSB this still doesn't rule out this autoimmune disease.

"Patients with Sjögren’s syndrome (SS) and negative SSA/SSB serology (ie. seronegative SS) have phenotypic characteristics different than seropositive ones, and thus may constitute a disease subset with a unique pathogenesis. Since these patients are older and have a lower frequency of hypergammaglobulinemia, rheumatoid factor, hypocomplementemia, they might be expected to have a more benign phenotype. However, recent reports highlight that these patients have more severe pain and a higher frequency of small fiber sensory neuropathy."*

*Baer AN, Birnbaum J. Seronegative Sjögren’s Syndrome Is Associated with a Higher Frequency of Patient-Reported Neuropathic Pain: An Analysis of the Sjögren’s International Collaborative Clinical Alliance Cohort [abstract]. Arthritis Rheumatol. 2015; 67 (suppl 10).
Thank you for your knowledgeable insight.

Do you know if Scleroderma similar to Sjögren's syndrome? How is Sjögren's diagnosed or eliminated? I’m conflicted if the pain I feel is nerve pain or muscle pain or both. My calf muscles involuntary go into flexed mode and very painful to walk not sure why I’m waking up with it, it lasts for a long time, eases up, then starts up again every couple days it.

I’m honestly not sure why I was given a diagnosis of small fiber neuropathy or why that conclusion was found.

Through the years dealing with this medically it has been assumed and labeled depression was the cause.

Having so many all over the place symptoms it seems too complicated to medically figure out, especially with my labs and MRI 1.5T images showing no cause, my normal results makes me feel like they think I’m crazy. Normal results are a good thing something to be happy about but when you feel like this with no answers, normal results become extremely frustrating.

I tell my provider I'm Not depressed, time and again until blue in the face. Yet medical notes reflect that I’m currently depressed when I’m not.

I agree dealing with this is very stressful and frustrating when severe worsening surges last months at a time couple times a year for over 6 years,

Being stressed not the same as being depressed. if I was depressed like I was (10 years ago) with these symptoms,  I wouldn’t want to be alive, I would’ve found a way to end it long time ago, Sadly how depression affected me.

I was given another antidepressant that supposedly doubly treats nerve pain, was on Cymbalta previously supposed to help with nerve pain too, after a year without benefit, I weaned myself off the Cymbalta.

Years before onset of my symptoms, I sought treatment for depression I was able to work through it with counseling & meds after some time was able to get off the antidepressants successfully.
1756321 tn?1547095325
One of the hallmark symptoms of scleroderma is the thickening or hardening of the skin. That symptom is not seen with Sjogrens. I found an informative article on the Sjogren's Syndrome Foundation.

"Sjögren’s symptoms frequently overlap with or “mimic” those of other diseases including lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and multiple sclerosis.

Rheumatologists have primary responsibility for diagnosing and managing Sjögren’s and can conduct a series of tests and ask about symptoms.  Your eye doctor or an oral medicine specialist also might run tests if Sjögren’s is suspected.

See below for a description of the most common tests for Sjögren’s that might be done.

There is no single test that will confirm a diagnosis, and someone does not have to test positive for all tests related to Sjögren’s to be diagnosed with the disease. However, the more tests that are positive, the easier the diagnosis.

If a patient is not positive for the blood test for the autoantibody SSA, one of the clearest blood test markers for Sjögren’s, then the diagnosis is more difficult. Since about 30% of patients are negative for this marker, being negative does not mean the patient does not have Sjögren’s.

A physician will have to determine the diagnosis through symptoms and other tests. A positive lip biopsy is considered the “gold standard” for diagnosing Sjögren’s, and if a patient and her or his doctor decide to confirm a diagnosis with this test, the patient most likely will be sent out to a specialist.

Until we discover and validate better and more specific biomarkers, diagnosing Sjögren’s can sometimes be an “art” based on the physician’s assessment of symptoms plus objective tests.

An international group of experts have formulated classification criteria for Sjögren’s to be used for diagnosis in clinical trials. These criteria were recently updated with the Foundation's help in bringing the international community together.

They consider dryness symptoms, changes in salivary (mouth) and lacrimal (eye) gland function, and systemic (whole body) findings.

Published classification criteria are designed for use in clinical trials and not for diagnosing patients in a clinic for general management and treatment. As such, they are very strict so that there is absolutely no doubt that a patient has Sjögren’s, something that is important to prove for participating in a clinical trial. Patients that do not meet these criteria can still have Sjögren’s.

Blood tests your physician may perform include:

• ANA (Anti-Nuclear Antibody)
ANAs are a group of antibodies that react against normal components of a cell nucleus. About 70% of Sjögren’s patients have a positive ANA test result.

• RF (Rheumatoid Factor)
This antibody test is indicative of a rheumatic disease, including rheumatoid arthritis (RA), lupus and Sjögren’s. It doesn’t, however, specify which rheumatic disease a person has. In Sjögren’s patients, 60-70% have a positive RF.

• SS-A (or Ro) and SS-B (or La)
These are the marker antibodies for Sjögren's. Seventy percent of Sjögren’s patients are positive for SS-A and 40% are positive for SS-B (these may also be found in lupus patients).

• ESR (Erythrocyte Sedimentation Rate)
This test measures inflammation. An elevated ESR indicates the presence of an inflammatory disorder, including Sjögren’s.

• IGs (Immunoglobulins)
These are normal blood proteins that participate in immune reactions and are usually elevated in Sjögren’s patients.

The ophthalmologic (eye) tests include:

• Schirmer Test
Measures tear production.

• Rose Bengal and Lissamine Green
Eyedrops containing dyes that an eye care specialist uses to examine the surface of the eye for dry spots.

The dental tests include:

• Salivary Flow
Measures the amount of saliva produced over a certain period of time.

• Salivary scintigraphy
A nuclear medicine test that measures salivary gland function.

A salivary gland biopsy (usually in the lower lip) might be done by a specialist to confirm inflammatory cell (lymphocytic) infiltration of the minor salivary glands.

Your physician will consider the results of these tests along with your physical examination to arrive at a final diagnosis."
1756321 tn?1547095325
Hi again.  I was on the autoimmune tangent due to low positive ANA but on further thought, a condition that can be missed but does mention quite a few of your symptoms is Chiari Malformation.  And I found a study that mentioned Chiari had caused exophoria (mentioned on your eye test).  

A sagittal (side view) MRI picks up the brain herniation into the spinal canal with Chiari One. Chiari Zero however has no herniation but can be picked up with a CINE MRI which looks at cerebrospinal fluid (CSF). The symptoms of Chiari is not the length of herniation but due to the blockage of CSF flow.

Chiari malformation...

"Can have no symptoms, but people may experience:

Pain areas: in the neck

Muscular: muscle weakness, problems with coordination, stiff muscles, or overactive reflexes

Sensory: pins and needles, reduced sensation of touch, sensitivity to light, or uncomfortable tingling and burning

Visual: blurred vision or double vision

Also common: difficulty swallowing, headache, impaired voice, nausea, rapid involuntary eye movement, ringing in the ears, or vertigo"
I’ll look into that thank you, I hope for answers soon, really can’t stand feeling like this. It’s so difficult to get thoroughness from providers.

having sudden on and off visual color differences between my eyes. It’s random, over the last 3 days I noticed it again, my right eye color perception has a grey lighter hue than my left, it happened few weeks ago and went away.

My left side of face near around temple and cheek has changed recently in asymmetry, the right side of my forehead is higher than my left when viewing in the mirror and head tilted back, also left temple appears a little  sunken, I have a deep indent along my skull sutures on my left side start almost middle skull then runs down an inch or so behind temple above ear, it’s very tender to touch near ear, feels like a soft spot,
I have lots of prickling sensations with numbness in my face on that side. Numbness in my neck in middle left side also runs to my collar bone, times it’s  tightening like it’s  swelling  around my eye and cheek bone and other times tightness in my neck below ear level feels like it’s swelling and really tight.  

my muscles are involuntary rigid neck, legs and arms.

I have chronic and constant thoracic pain spreading through all of my  left side intercostal region to the side of flank,  extreme pain with movements like folding laundry or doing dishes. This is what my first symptom that doesn’t ever go away. I also have new onset pelvic numbness.
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