This Is MS Multiple Sclerosis Knowledge & Support Community

Hi, everyone.

I'm a 40 yo female with a history of what's been diagnosed as complicated migraines and fibromyalgia. I felt pretty confident in those diagnoses until recently, when my migraine pattern changed significantly and I started to experience new symptoms. I saw my primary care doctor, who did an in-office neurological screening (that was fine) and ordered some tests on the basis of the slight tremor she could see in one hand only and my symptoms. Metabolic panel, kidneys, liver, and vitamin/mineral levels were all normal. Yay! However, the MRI showed a single hyperintensity in the anterior parietal lobe. The radiologist noted that it was nonspecific and of a kind that sometimes has no known etiology, but is also seen in MS and migraines. I was referred to neurology for a consult and am waiting for that appointment. In the meanwhile, the neuro has ordered ultrasound/doppler testing of my carotid.

That's my situation. I'll attach below the "symptom" list I just wrote up to bring to neuro with me.

So. I guess my question is .. can anybody share a similar experience or give me any insight? Does this all seem consistent with things you've experienced or known other MS folks to experience?

I'm sorry if it seems like I'm butting in when what's happening with me might be completely unrelated to MS. I'm trying to stay positive and calm while also learning what I can.

Thanks in advance!

MamaCat

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These things all seem to come and go as a group. I've had three of these "episodes", beginning in December 2013.

• Intermittent hand tremor - one side only, comes in 3-7 day phases that are separated in time by weeks; this has happened twice on my left side and once on my right. I am right-handed.
• Fatigue
• Spacey, difficulty with concentration (markedly beyond the usual "need more coffee" kind of thing)
• weak feeling in arm on affected side
• weak feeling in legs, i.e. fatigued feeling when walking through the house
• muscle spasms/Charley horses in calves, hamstrings, and feet throughout the day/night


These things are more persistent and/or can be isolated

• twitching eyelid - one side only, comes in phases similar to hand tremor, but not necessarily coinciding; began 1/2013

• visual: flashers, light sensitivity, achiness (not sure how else to describe this; it’s like my eyeball aches), blurry vision, dry eyes (diagnosed around 2012)
o Persistent blind spots. This has happened twice, separated in time by about three years. The first one lasted about six weeks; examined by ophthalmologist, who didn't find anything abnormal. Second one lasted about three weeks after what I took to be a migraine aura without headache. Both gradually resolved.

• migraine headaches: migraines began at age 16 with blind spot, continued through early 20s as headaches with occasional visual aura, no migraines for almost ten years, until fall of 2007, when I experienced painless migraine aura (blind spot, nausea, tingling, confusion, aphasia) and had an MRI w/wo contrast at ER; MRI was normal, dx was "complicated migraine". Between 2007 and 2013, I had a handful of migraines, typically painless or very little pain. Aura lasts between 20 minutes and 2 hours, follows consistent pattern: blind spot, fatigue, spacey, nausea, mild or moderate aphasia); in the last year or so, this pattern has changed again to become more frequent (approx 1-2/month).

• general: fatigue, increased clumsiness (losing balance slightly while standing still or walking, swaying, like mildly drunk), stiffness

• tingling and itching: intermittent tingling, itching, and numbness in one spot on my back for about five years; can be intense. PCP theorized in 2009 that it was a nerve being pinched by a knotted muscle in my back.

Previous diagnoses: migraine w/aura (1990), fibromyalgia (2000), complicated migraine (2007)

MamaCat wrote: I saw my primary care doctor, who did an in-office neurological screening (that was fine) and ordered some tests on the basis of the slight tremor she could see in one hand only and my symptoms. Metabolic panel, kidneys, liver, and vitamin/mineral levels were all normal.

Welcome to ThisIsMS, MamaCat. We are happy to share our opinions; you are not "butting in". Many of us share your symptoms.

The very first testing ordered by your primary care physician (or neurologist or ophthalmologist) should be to investigate a possible vitamin B12 deficiency. Please watch the following and compare your symptoms to the list of Signs and Symptoms; many of yours are there: migraines, fatigue, weakness, mental impairment ("Spacey"), visual disturbances, abnormal gait ("swaying"), tingling/numbness, etc.:

"Everything You Want Your Doctor to Know about Vitamin B12"



I highly recommend this 50-minute documentary from the filmmaker Elissa Leonard, 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."

If these were not done, ask for them and ask for copies of the results for your own file. There have been several malpractice cases, which won million of dollars each (!) when doctors did not look for vitamin B12 deficiency and patients went on to develop irreversible neurological damage.

Initial testing usually includes #1 serum B12 test, #2 serum folic acid test, #3 serum homocysteine test, and #4 a urinary methylmalonic acid test.

This is the recommendation by NHE: " In addition to watching the documentary, be sure to read the book "Could It Be B12?"
http://b12awareness.org/could-it-be-b12 ... diagnoses/

To eliminate B12 as a possibility, your doctor will need to run a full panel of tests. These include...

• serum B12
• RBC folate
• urinary methylmalonic acid (uMMA)
• fasting homocysteine
• unsaturated B12 binding capacity

The tests should be run after not taking either B12 or folate supplements for at least 72 hours."



We wish you all the best.

Hi, Lyndacarol!

Thanks for your response. I will definitely check that out.

MamaCat

Haven't had time to finish the video you linked, but did go back and double-check my serum B12 test results - 762.

Guess it's just 'hurry up and wait' now.

MamaCat wrote:Haven't had time to finish the video you linked, but did go back and double-check my serum B12 test results - 762.

Guess it's just 'hurry up and wait' now.

Your serum B12 level of 762 is certainly above the 550 pg/mL cutoff recommended in the book, Could It Be B12? ; the book also recommends that the level be around 1000 pg/mL for those with neurological symptoms.

Also, all the initial tests mentioned above, considered together, give a more accurate assessment of whether there is a B12 deficiency in the blood than if the serum B12 is done alone.

It is possible to have sufficient B12 in the blood, BUT still have a functional deficiency in the cells/tissues – this is easily determined or diagnosed by a therapeutic trial treatment. Yes, patience is required.