This Is MS Multiple Sclerosis Knowledge & Support Community

Hello,

I've had about two years of MS-ey symptoms, all which occur in episodes. I had numbness in my left hand (lasted for a few days), spasms and tingling in my feet (ongoing), nystagmus for about a month every morning (although it was only in the morning, so no doctor was ever able to see it and was therefore never officially diagnosed as nystagmus), double vision (diagnosed with strabmismus), which also lasted in the morning and still does, eye pain in right eye that lasted for over a week, and facial pain (it sounds like trigeminal neuralgia -- shooting pains, some transitory hearing loss, and dull ache near jaw -- but I didn't go to the doctor when it happened, so it wasn't diagnosed either).

I had an MRI last May that came back completely normal. My first two neuro exams were normal as well. After the TN-like episode, I went to an MS specialist. My exam revealed hyperreflexia, a relative afferent pupillary defect, and sensory defects in my left leg. I had another MRI on a 3T machine, and I just got the results: everything normal.

Some people close to me have suggested there's something psychological going on, but I can't fake reflexes and pupil problems. I was too groggy to fake nystagmus, and I have video of my spasms and strabismus (right eye turns in). Maybe they're right, though, and I'm in denial?? I don't know.

I guess I don't know what else could cause this. I'm honestly at a loss. I know some people have no lesions and still have MS, but that's pretty rare. Right now I am doubting that I have MS. But what else could cause this? What else should I do, if anything? I don't want a lumbar puncture after having a negative MRI. Should I just let go of ever finding out what's wrong?

I do have a slight B-12 deficiency, but I can't imagine that a minor B-12 deficiency causes all those things.

karebear123 wrote:I do have a slight B-12 deficiency, but I can't imagine that a minor B-12 deficiency causes all those things.

Welcome to ThisIsMS. Do you have your B12 test results? The laboratory range for B12 is very broad, usually around 200-800 pg/mL, and it's possible to be in the lower end of the range and still be deficient. Did you get any other tests done, e.g., methylmalonic acid (MMA), homocysteine, or folate? Both MMA and homocysteine will be elevated if B12 is deficient though MMA is thought to be more specific to B12 as homocysteine can be elevated if either folate or B6 is low.

karebear123 wrote:But what else could cause this? What else should I do, if anything? ...

I do have a slight B-12 deficiency, but I can't imagine that a minor B-12 deficiency causes all those things.

Welcome, karebear123.

A B12 deficiency can cause all your symptoms. Numbness/tingling in the hands or feet is called "peripheral neuropathy." Peripheral neuropathy is the most commonly reported symptom of a B12 deficiency, which any person at any age can develop.

Examine the following website: http://b12awareness.org/ and if possible, read the book (Could It Be B12? An Epidemic of Misdiagnoses by Sally Pacholok, RN, BSN, and Jeffrey Stuart, D.O.) mentioned on the website (possibly available through your library).

If you do not already have copies of your test results, you can probably request copies from your doctor's office for your own file.

But what about nystagmus and binocular double vision? As in, my eye turns in. From what I read those two things are only neurological or vestibular. I can explain away the fatigue, the tingling, and the spasms, but not the nystagmus or the double vision. Especially not the RAPD and hyperreflexia.

"What else should I do, if anything?"

You should ask all these questions to your doctor. Since he/she has examined you, he/she would be in the best position to give you answers.

karebear123 wrote:But what about nystagmus and binocular double vision? As in, my eye turns in. From what I read those two things are only neurological or vestibular. I can explain away the fatigue, the tingling, and the spasms, but not the nystagmus or the double vision. Especially not the RAPD and hyperreflexia.

Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"

I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN, & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

@1:23 "The neurological manifestations well precede the hematological manifestations."

@4:50 Pacholok says, "MS is a demyelinating disease and so is B12 deficiency. You can't tell the two apart unless you test for that."

From later in the video:

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

In addition, "eye turns in "(a.k.a. strabismus or "cross-eye") can be a physical sign of faulty methylation, which can be caused by a vitamin B12 deficiency.

And, of course, Elliot is right: your symptoms and this possibility should be discussed with your doctor. Well-meaning people on the Internet cannot diagnose anything. We can only offer our suggestions.