The waiting game

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

The waiting game

Postby random » Thu May 29, 2014 3:17 pm

So, this all started back in January.

I first noticed some odd sensations on the left side of my face. At times when it should feel hot (such as a car's defrosters hitting it) it would feel cold. If I rolled down the window and let the cold air come in, it would feel hot (like a lighted candle being held near my face). I didn't think too much about it.

Then one morning I have a memory that it felt weird when I brushed my teeth and breakfast didn't taste right. Again I didn't think much about it (my brain really does not function well before noon). As the morning goes on I notice my face is feeling odd, kind of numb like I've been out in the cold, but I hadn't and when I touched my face it felt warm enough. So, I finally get a chance to eat lunch and I notice I absolutely cannot taste anything. I can smell it just fine, just no taste. Its hot soup, but I cannot feel the heat on my mouth or lips.

I mention it to my husband and idly between other activities we google the symptoms. The top items that come up are stroke or something else that I can't remember at the moment. I slowly start to panic (we'd recently had an acquaintance who had a stoke) and end up leaving work to head to the ER.

Funny enough, when a 40 something woman walks into an ER saying that one side of her face has gone numb, she jumps straight to the head of the line. :)

I gave samples of just about every body fluid its possible for someone to give. They gave me an EKG, and MRI, and whole batteries of other tests.

Five hours later I'm sitting there bored and scared (its amazing how those two things can combine) when the doctor walks in. EKG is fine. No sign of stroke in the MRI or brain tumors. (*whew*)
"However, there are two lesions near the base of your brain. You have MS. Here's a referral to a neurologist." My jaw drops and I stare at him uncomprehendingly.

Fast forward a couple of weeks and my face is still numb and I still can't taste anything. I'm also a nervous wreck. I finally get in to see the neurologist and he says he doesn't think its MS. (*whew*) He mentions vitamin deficiencies like B12 but also wants to schedule me for a spinal tap (just to verify there isn't a problem there). So I give a bunch more blood and walk away thinking that a vitamin deficiency is way more preferable to MS.

So time passes again and I read up on all sorts of things that can happen with vitamin deficiencies. Some of those are down right scary. The feeling has since returned to my face and I can taste again. Now I get periodic bouts where the same area of my face would tingle really strongly, I would get a metallic taste in my mouth, and for a brief moment of time I would feel like someone has turned gravity down. This would last for a minute or two and then stop. My right hand seems to want to fall asleep easily and its a bugger to get the feeling back, sometimes taking 5-10 minutes of moving my arm around, etc.

There's an issue scheduling the spinal tap, so I go back to the doctor before that happens. The only thing he sees is that my B12 is on the low end of the normal range. However, my Homocysteine level is also on the low end of normal (and its normally high with a B12 deficiency). Since I've already started taking supplements, he says we'll keep an eye on it and straightens out the scheduling mess with the spinal tap.

So I have the spinal tap. The facial stuff has eased off and now I just periodically get a tingling sensation on my lip. i am now, however, also getting tingling sensations in my lower legs and feet. This comes and goes, though when it comes it seems to last for a few days at a time. I am also exhausted. Not sleepy exhausted, but bone weary, physically worn out, weak as a baby, like someone has turned up gravity to 3 times normal tired. At times its even too much effort to sit in a chair. I wonder if this isn't B12 anyway and consider asking him to check my levels again to see what they are doing.

A few more weeks and I'm back at the neurologist. The spinal tap came back positive for Oligoclonal Bands. Specifically "greater than 5 well defined gamma restriction bands that are not present in the patient's corresponding serum sample". Those words have been burned into my brain.

So we schedule another MRI. This one also including the c-spine both with and without contrast. He also schedules a second spinal tap to assure there wasn't a false positive.

I have since gotten the results back from the spinal tap. They are the same as before.
Positive for Oligoclonal bands.
Neuromyelitis Optica IgG is negative (rules out Devic's disease).
IgG Index is high.
Something is definitely going on in my central nervous system.

So here I sit until I go back to the neurologist on Tuesday. I've been dealing with everything pretty well, but now that its close to my appointment time, I find my anxiety levels are rising. I've also been driving myself crazy (my husband wants to know how we could tell the difference) paying attention to every little thing my body is doing and wondering what may be causing it.

I'm still so very tired. I used to love to go for evening walks. I'd do 2-3 miles and enjoy the quiet evening. Now I drag myself along making bargains to myself just a little bit further then you can turn around and go home. The muscles on my thighs are so tight they ache and little I do seems to help. Face has been behaving itself, though the tingling in my feet and lower legs is still there.

I have no idea if this is MS, though there are enough signs to make it a possibility. I don't want a MS diagnosis, though at this point I think I'll be relieved just knowing what is happening.
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Re: The waiting game

Postby lyndacarol » Thu May 29, 2014 4:25 pm

Welcome to ThisIsMS, random.

Numbness/tingling in the arms, hands, legs, and feet is the definition of peripheral neuropathy. In the list of blood tests recommended by the University of Chicago, testing for a vitamin B12 deficiency is listed first:

http://peripheralneuropathycenter.uchic ... #bloodtest

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
Hepatitis C and B

The neurologist who mentioned a possible B12 deficiency may be onto something, in my opinion, especially since your serum B12 level was low (Do you have the actual number of the test result?) Yes, the homocysteine level is usually high with the B12 deficiency, but it is possible that a deficiency is NOT in the blood, but can be in the tissues.

You may find information in the following video interesting: "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."

@1:46 "In 1948 scientists isolated a red crystalline pigment and named it vitamin B12. It is a primordial molecule responsible for the health of all the DNA in all our cells. The Framingham Offspring Study suggests 40% of Americans have suboptimal B12.

A B12 deficiency is easily treated with supplementation (a B12 injection once a week for 10 weeks could be a useful diagnostic or therapeutic trial treatment); when it comes to MS, the cause is unknown and the "experts" have no effective treatment for it.

MS is a diagnosis of exclusion. There are many common conditions to rule out first. Take a deep breath – the road to diagnosis takes time.

All the best to you.
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Re: The waiting game

Postby NHE » Thu May 29, 2014 5:05 pm

I second LyndaCarol's recommendation on investigating B12. In addition to watching the documentary, be sure to read the book "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.
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Re: The waiting game

Postby random » Thu May 29, 2014 8:07 pm

Looks like B12 was 492 pg/mL
Homocysteine was 6.9 umol/L

I believe we'll be checking again in about a month.

Can a vitamin B12 deficiency cause Oligoclonal bands in the CSF?
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Re: The waiting game

Postby NHE » Thu May 29, 2014 9:43 pm

random wrote:Can a vitamin B12 deficiency cause Oligoclonal bands in the CSF?

Several conditions can cause oligoclonal bands in CSF. It's not exclusive to MS though it is consistent with MS which is a diagnosis of eliminating all other likely possibilities. ThisIsMS member Cheerleader has discussed this previously pointing out that patients with stroke and dementia can also have CSF oligoclonal bands. Try using the forum's search utility to find her old posts. search.php

I don't know at this time whether or not a B12 deficiency can cause oligoclonal bands. However, it can cause demyelination leading to debility. Subsequent immune system activation leading to oligoclonal bands seems reasonable as immune cells cross the blood brain barrier to go in and clean up the damage.

Here is an article discussing the "Differential Diagnosis of MS" by Neil Scolding which might be helpful. ... l.pdf+html
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Re: The waiting game

Postby NHE » Thu May 29, 2014 10:01 pm

OK, here's a paper which states that oligoclonal bands are found in B12 deficiency.

Magnetic resonance imaging (MRI), cranial computerized tomography (CCT), evoked potentials and cerebrospinal fluid (CSF) analysis in five patients with funicular myelosis.
Neurosurg Rev. 1987;10(3):209-11.

    Five Patients with vitamin B12 deficiency were examined by means of MRI, CCT, VEP, BAEP, EEG, and CSF. In 3 patients medianus-SEP and EMG/ENG were recorded as well. Partly, findings of MRI, CCT, VEP, BAEP, SEP, and CSF were similar to those in multiple sclerosis. This is not very surprising considering that the central nervous system lesions in vitamin B12 deficiency consist of disseminated demyelination. Because of this all these investigative techniques must be considered non-specific. Appraisal of findings is only possible in connection with the case history, clinical findings, and supplementary diagnostic measurements.
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