should I seek a second opinion?

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

should I seek a second opinion?

Postby searchingforanswers » Mon May 15, 2017 7:30 am

Hi all. About six years ago (I was probably 34) I went to a neurologist after the side of my face went numb. It started out as tingles on my scalp and then eventually the entire side of my face and half of my tongue went numb. I never noticed that my face had a droop but I sure felt like it did. I was driving when this happened and my mother advised me to go to the ER, so away I went. At first they thought I was having a stroke and I was sent immediately for a CT scan, which confirmed that I was not having a stroke. They ran a few other tests and advised me to see a neurologist.

Fast forward to the visit with the neurologist. He sent me for an MRI, and they found several small areas (punctate foci, I believe they were called) of T2 hyperintensity. (I should mention that I was also having some tingling and weakness in my hands). My neurologist sat me down and, for over an hour, explained to me what MS was. He was sure that's what I had. He sent me for a lumbar puncture after that, but no bands were found and, as far as I can recall, all of the other labs were normal. I was sent for all kinds of other labs, too: HIV, Lyme, etc. The only thing that came up was very, very low B12. The neurologist determined that what I had wasn't MS but just low B12.

I went on about my business assuming that I didn't have MS until about a year ago when another symptom cropped up. My left thumb went totally and completely numb. I mean numb to the point that I couldn't feel a really, really hard pinch with my fingernails. I was terrified. I immediately made another appointment with my neurologist, but as my neurologist didn't have an opening I instead went to see another neurologist in the same office. He sent me for another MRI which revealed basically the same thing, but I couldn't find my old MRI disc for comparison. He also ran more labs and again found low B12 so I was sent for B12 injections again.

Now I am having pins and needles in my left foot occasionally (it woke me up one night about a week ago and they almost hurt). I also have tingling along basically my left side. It migrates from my left glute down my left leg and even sometimes my private parts tingle. (Sorry if that's TMI.) I should also mention that I have occasional nystagmus, where my eyes dart back and forth for no reason. I also have severe fatigue. And last week my legs, from the trunk down, felt like absolute Jell-O. I mean to the point that it felt like I had lifted very heavy weights. It was strange. My neurologist at my last appointment sent me for another B12 test and for a sleep study to see why I was so fatigued all the time but my B12 was ok that time.

Should I seek a second opinion for MS? My husband was recently diagnosed with MS (as in a couple of weeks ago) so I feel like I can't deal with myself at this point and should just concentrate on his health and well-being. But he is pushing me to get a second opinion. He says there's too much going on for me not to.
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Re: should I seek a second opinion?

Postby momz » Mon May 15, 2017 8:20 am

I am not an expert at this, as I am still in the process of figuring out what is going on my own body. But, from what I understand, the process of getting to the diagnosis of MS is a process of exclusion. Meaning if you are found to have any other problem along the way, that problem needs to be address and corrected, then if your symptoms continue, further evaluation is needed to determine if there is any additional problem and so on and so forth. So, the B-12 was corrected, you still have symptoms, next step must be the sleep study.

In the meantime, MS is neither confirmed nor excluded. But, you have to go through everything else before getting to that final diagnosis. AND, it is possible that through the process of evaluation, the cause will be found and corrected and MS can the set aside.

Anyway. A second opinion is always an option, but it will take forever to get that first appointment, and you would be starting back at square one again.
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Re: should I seek a second opinion?

Postby lyndacarol » Mon May 15, 2017 1:54 pm

searchingforanswers wrote:The only thing that came up was very, very low B12. The neurologist determined that what I had wasn't MS but just low B12.

....He also ran more labs and again found low B12 so I was sent for B12 injections again.

...My neurologist at my last appointment sent me for another B12 test and for a sleep study to see why I was so fatigued all the time but my B12 was ok that time.
Welcome to ThisIsMS, searchingforanswers.

A long time vitamin B12 deficiency cannot be corrected overnight. It is possible to be deficient in the body's tissues, even when the serum level looks good.

I suggest you see your GP and be thoroughly tested for B12. Undoubtedly, you had the serum B12 test (will you share the test result number?). Have you had the RBC folate test? The serum homocysteine test? The methylmalonic acid test?

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/
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Re: should I seek a second opinion?

Postby NHE » Mon May 15, 2017 2:01 pm

momz wrote:So, the B-12 was corrected, you still have symptoms, next step must be the sleep study.

In the meantime, MS is neither confirmed nor excluded. But, you have to go through everything else before getting to that final diagnosis. AND, it is possible that through the process of evaluation, the cause will be found and corrected and MS can the set aside.

Anyway. A second opinion is always an option, but it will take forever to get that first appointment, and you would be starting back at square one again.


Keep in mind that B12 is not an instant fix if you already have B12 deficiency induced neurological damage. Both B12 shots and sublingual supplements will likely give you an energy boost if you're B12 deficient and they should also stop the progression of B12 deficiency induced neurological damage. However, any existing damage caused by B12 deficiency will still take time to heal. Taking methylfolate along with the B12 is also a good idea since B12 and methylfolate work together. Low RBC folate might potentially explain why someone experience little to no benefit from the B12.
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