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B12 Deficiency, MS? Or something else? Help!

Hello, I am desperately hoping someone can help. I have been having neurological symptoms off and on for 6 months and am terrified I have MS.

My symptoms started about 6 months ago and come and go, I seem to go a month with some symptoms and then nothing for a month, then back on. All symptoms are relatively mild and NO loss of sensation or feeling (i.e. I don't think any nerve damage... yet).

Right pinky gets numb off and on for months now (this could be mechanical from cubital tunnel but no nerve damage. Nerve Conduction Study was normal).
Exactly symmetrical mild numbness of both feet (mostly toes). Come and go throughout the day.
Symmetrical tingling at back of calves (literally would happen at the exact same time) and last for a few seconds per day.
Both hands sensitive to heat and cold.
Left foot buzzing (feels like it's vibrating) on and off throughout the day. Sometimes my right foot will also buzz or feel pins and needles but not as bad as the left foot.
Left thigh: top layer of skin feels cold/slightly numb and this will comes for an hour or two here and there and then subside. Once my right calf felt the same cold/numb skin sensation for about 45 minutes.
Vision seems a bit off, but hard to put my finger on, comes and goes throughout the day and only when I'm at work, some days no problems at all.
Both legs felt weak for a 2 week period last month, but exercise makes it better, and the weakness was only noticeable when I was at home, as soon as I leave my house I don't notice it.
I feel a bit uncoordinated lately like I'm constantly dropping things.
Racing heart at night sometimes, and racing heart from small actions that should not make someone's heart go fast....like standing up.
Wake up at night with whole body internal tremors.
All over little internal muscle twitches - it seems no part of my body is off limits for these internal muscle twitches. One time BOTH of my big toes started twitching at the EXACT same time, but mostly the little muscle twitches are NOT symmetrical.
Loss of appetite
I would say I am depressed, anxious, irritable and withdrawn.
Constant neck creaking and muscle tightness in back and neck (don't know if this is related to my other symptoms above, or if totally separate from a repetitive strain injury).

I have had my b12 checked and it is 350, I have mild ulcerative colitis/Crohn's since 2007, my red blood count is low (3.89), ferritin (iron) is low/normal range at 41. A year ago my blood cells were large, but this round of blood tests they were not abnormally large just low red blood count.

White blood count is normal. If it was MS would my white blood count or inflammation be high?

Any ideas what could be wrong? Does this sound like MS?

I have an MRI booked for later this month.

Any help/insight would be appreciated...
9 Responses
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1831849 tn?1383228392
Hi Cally -

It does seem odd that your neuro would just order an MRI of your ned.. And yes, neck = c-spine. The typical MS MRI  includes head and c-spine, both done with and without contrast. It can also include thoracic spine.

I would ask your neuro when you discuss the results. I'm assuming that "No evidence of demyelination" is from the radiology report and that you will be discussing results with neuro.

Kye
Helpful - 0
Avatar universal
Thank you for getting back to me!!

Yes my MRI was requested by a neurologist and the purpose of it was to rule out MS; at the time he ordered it I just assumed it would look at an area that would be adequate to rule out MS? But now I am confused as to why it would be just the neck?

When I was at the hospital getting the MRI I asked the technician what part of me the MRI was looking at and she was the one who told me "just your neck."

I am further confused by the technician's use of the word "neck" as by neck, does this mean my cervical spine?

Thank you!
Helpful - 0
5112396 tn?1378017983
Was your MRI requested by a neurologist? Did you confirm with your doctor that it would include the brain?

A neck MRI could also image the actual vertebrae if they were wanting to rule structural damage as well (like herniated discs, etc.). It's common to get a cervical spine MRI when MS is a question mark, but I've never heard of the brain being skipped. This would be something to ask your doctor about. It could be as simple as some paperwork being lost (the MRI request or the report).

I don't think MS is what you're dealing with, but still, the news of no demyelination in the results you got is great news!
Helpful - 0
Avatar universal
My MRI results are back and showed "no evidence of demyelination"

However the MRI was only of my neck? Which I thought was weird, why would they just do the neck?
Helpful - 0
695104 tn?1442193588
I can only speak for myself, and my years of dealing with it and tell you that yes, indeed, stress/anxiety/depression can cause some very real physical responses. And depending on the stressor, I imagine symptoms could worsen/recede and or be off/on. You mentioned cortisol, and you're so right about how it affects our bodies.

My husband has Addison's disease, his adrenal glands make no cortisol. He takes replacement doses (divided in 3 throughout the day) and he will be on them for life. Ironically, my mom has Cushing's, and she produces too much cortisol, so she is on medication for that...I have said it's a shame we can't split the difference between them...

If you look up Adrenal fatigue, there is some good information on the key role the adrenal glands play on our health. Research the flight or fight response that occurs if we are "dumping out" cortisol in response to anxiety/panic. And in the case of Addison's/ Cushing's and other issues, If the sodium-potassium exchange pump gets out of whack, it wreaks havoc on the body.

There are depression and anxiety forums here on medhelp, maybe check them for support, too.

Maybe your Dr can assist you with ANA and other testing, and or refer you to  specialists in the different practice areas.

Alex is right, you're having Crohn's will probably show inflammatory markers in your blood work. When checking ANA titers, there are different patterns and levels that can show positive, and represent different autoimmune processes.

In my case, I had 2 different patterns and med-high levels that occurred with my blood work over a few years. I am ashamed to say that I tried to ignore it all and play like an ostrich, burying my head in the sand. Until the day my GP called me and told me the name of the Rheumatologist, date and time he had made me an appointment with. In hindsight, I know it's better to know so you can arm yourself and deal with things if at all possible.

One last thing, you mentioned your nerve conductions were all normal. During the Neuro testing prior to my husband's RRMS diagnosis, his were not, and his reflexes were also abnormal.

Regards,
C
Helpful - 0
667078 tn?1316000935
If you have Crohn's your ANA might be higher that shows inflammation in the body. I have no idea if you have MS. There are so many illnesses which act like MS so it really takes a doctor to figure it out. They can tell a lot from a simple Neurological exam reflexes etc. Many people who come here get diagnosed with MS and just as many something else all together.

Alex
Helpful - 0
Avatar universal
Thanks for your note! I haven't had my vitamin D checked or had an ANA panel but wish my Dr. had ordered one now (and you think he would have given the symptoms I was in there for!)

Yes my husband said thinks this could be anxiety/stress related I'm sure my levels of cortisol were elevated non-stop from August-December due to my job and school. And all these symptoms started in August when my workload and stress levels got crazy.  I think I had an anxiety attack at night once or twice, I couldn't sleep, my heart was pounding out of my chest all night for no reason, and when I went to get up my legs were Jell-O, shaking so badly and so weak for a few moments...well this sent me into a fresh blind panic.

But could anxiety/depression really cause such an array of real symptoms that persist (off and on) for months? Just seems so unlikely?
Helpful - 0
695104 tn?1442193588
supermum_ms gave good advice.

Among other diseases, my husband has RRMS. He was diagnosed "out of the blue" so to speak. He had left leg weakness, 1 instance of double vision years prior, increased fatigue, and some bowel/bladder issues that we attributed to "getting older" (50) and his Addison's disease diagnosis. His symptoms did not get better with exercise, and from what I know MS fatigue/weakness would likely get worse if you aren't careful how much and for how long you exercise.

I would also ask have you had an ANA panel run? Its a specific blood test, checking for auto-immune issues (I have Lupus, and IC).
Have you had your Vit D checked? If it's low, it can cause symptoms. Your B12 while in the normal range, is on the lower end. My husband's Dr as well as my Dr have both of us on sublingual supplements, and both Drs like to see our levels above 800. Of course as we are all different, this, along with everything else, would be something for you and your Dr to discuss. Just some thoughts...

I know you say you're depressed, anxious, irritable, withdrawn...have you talked with your Dr about it? Or seen a Dr who specializes in those issues?

Anxiety/depression can cause a myriad of very real symptoms...such as irritability and being withdrawn. I say this not to "pooh pooh" your symptoms as "all in your head", because I have dealt with depression/anxiety in my life. They can cause very real issues. And knowing things just don't "feel right" can cause it all to heighten, then it's a vicious circle. There's a lot of good treatment strategies these days...finding a good Dr and or Therapist is helpful.

It's good you're seeing your Dr, and getting yourself checked. Let us know how your MRI goes, hopefully you find some answers and feel better soon!

Regards,
C
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hi and welcome,

You asked if this sounds like MS, and to be honest I really don't think MS would be on the top of your list of possibilities. You just seem to have way too many sx's happening over a very short time frame and from what you describe, those sx's are also mainly symmetrical. Sx's of bilateral weakness that improve with distraction/activity or improve with exercise is not consistent with weakness that occurs in people with MS.

So from my perspective, i would think that your sx's are not specific enough or consistent, for MS to be the most likely causation. Please try to keep an open mind, there are other more common causes to the many sx's of MS, and with out having any sx's particularly consistent with what is more typical to MS, it would not be in your best interest to become overly worried about MS, when it may not be MS at all and your sx's 'possibly related' to those blood test results.

Cheers...........JJ  

      
Helpful - 0
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