Possible A-typical Ms?

[BlueKitty92]

My daughter has been experiencing vision loss since she was 15 years old. We were originally told it was due to hypotension and she would outgrow it. It has been 5 years now and it has only gotten worse. She experiences it several times a day throughout the day. When she loses her vision it's like someone switching off a light switch, one second she can see the next second everything goes black.

Her new cardiologist told her the vision loss she is experiencing is not from Hypotension so he referred her over to a Neurologist. The cardiologist did a few tests prior to the referral .. EKG, Echocardiogram and holster monitor test. Those came back normal except the holster monitor which showed she has tachycardia. He prescribed her some medication but so far 3 months later no improvement with her vision.

The Neurologist agreed and said it was not related to hypotension and ordered numerous tests, but those came back normal as well ... Brain MRI, MRA, CTA Scan, Bloodwork, Ultrasound of her neck.

Her follow up visit with the Neurologist was yesterday and he would order a Visual Evoked Response test to see if it could possibly be related to MS.

Our family always has Atypical diseases/conditions and I was just wondering could this possibly be Atypical MS. The only symptoms she is experiencing is vision loss .... no fainting, no dizzy spells, no headaches .. nothing else. This also only happens when she's sitting and standing never laying down.
Is there any additional tests that anyone can recommend or suggestions?

[lyndacarol]

My daughter has been experiencing vision loss since she was 15 years old. We were originally told it was due to hypotension and she would outgrow it. It has been 5 years now and it has only gotten worse. She experiences it several times a day throughout the day. When she loses her vision it's like someone switching off a light switch, one second she can see the next second everything goes black.

Her new cardiologist told her the vision loss she is experiencing is not from Hypotension so he referred her over to a Neurologist. The cardiologist did a few tests prior to the referral .. EKG, Echocardiogram and holster monitor test. Those came back normal except the holster monitor which showed she has tachycardia. He prescribed her some medication but so far 3 months later no improvement with her vision.

The Neurologist agreed and said it was not related to hypotension and ordered numerous tests, but those came back normal as well ... Brain MRI, MRA, CTA Scan, Bloodwork, Ultrasound of her neck.

Her follow up visit with the Neurologist was yesterday and he would order a Visual Evoked Response test to see if it could possibly be related to MS.

Our family always has Atypical diseases/conditions and I was just wondering could this possibly be Atypical MS. The only symptoms she is experiencing is vision loss .... no fainting, no dizzy spells, no headaches .. nothing else. This also only happens when she's sitting and standing never laying down.
Is there any additional tests that anyone can recommend or suggestions?

Welcome to ThisIsMS, BlueKitty92.

You have said that your daughter's neurologist ordered bloodwork. I would suggest that your daughter be thoroughly screened for a possible vitamin B12 deficiency (An outdated "serum B12" test alone is not adequate to detect a deficiency.), if this was not done already. Her symptoms are limited (vision loss and tachycardia) and consistent with many conditions, including B12 deficiency and MS (The MS diagnosis cannot be made until more likely possible causes have been ruled out first.)

From page 156 of What's Wrong with My Child? by Sally M. Pacholok, RN, BSN and Jeffrey J. Stuart, D.O.:

Costs (approximate – if not covered by insurance) of commonly used blood tests for B12 deficiency:

Serum B12 (outdated test)… $50
HoloTc (newer, more reliable)… $118
Serum homocysteine… $147
Methylmalonic acid test (serum or urinary form)… $150

Among MANY symptoms are the following:

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide

Anyone at any age can develop a B12 deficiency. Vitamin B supplements should not be taken before testing, as doing so will skew test results.

Your final sentence asked for any suggestions; these are mine.

[NHE]

My daughter has been experiencing vision loss since she was 15 years old. We were originally told it was due to hypotension and she would outgrow it. It has been 5 years now and it has only gotten worse. She experiences it several times a day throughout the day. When she loses her vision it's like someone switching off a light switch, one second she can see the next second everything goes black.

Her new cardiologist told her the vision loss she is experiencing is not from Hypotension so he referred her over to a Neurologist. The cardiologist did a few tests prior to the referral .. EKG, Echocardiogram and holster monitor test. Those came back normal except the holster monitor which showed she has tachycardia. He prescribed her some medication but so far 3 months later no improvement with her vision.
...
Is there any additional tests that anyone can recommend or suggestions?

With any cardiovascular symptoms, I feel it's important to check homocysteine levels along with red blood cell (RBC) folate. Homocysteine is a cardiotoxic amino acid that builds up when folate, vitamin B12 or vitamin B6 are low. High levels of homocysteine have been linked to arrhythmia, heart attack, stroke and cerebral atrophy and other conditions as well. The standard range for homocysteine is 4-12 µmol/L however, one medical group in my area wants to see it less that 9 µmol/L due to a significant increase in heart attack risk in patients with coronary artery disease so shoot for less than 9 µmol/L just to be safe.

Plasma homocysteine levels and mortality in patients with coronary artery disease.
http://www.ncbi.nlm.nih.gov/pubmed/9227928

By the way, I'm not familiar with the type of vision loss you describe being associated with MS. Opticneuritis, which causes a hazing over like wearing permanently fogged over glasses, is more common.