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My Second Home at the Clinic

Jan 01, 2009 - 5 comments

I am wondering where to go from here.  Last April I went to the ER with extreme dizziness, and left arm numbness and tingling down to my fingers.  While there, I had a BP of 201/ 186.  Although I have a family history of high BP, before this point, I had only had high white coat BP.  I started on BP meds in June, and my BP is regulated well.

At the ER I had a CT of the brain which led to an MRI with incidental findings of an arachnoid cyst (~4x5x6 cm) in the left temporal area, a tiny CCM or chronic micro-hemorrhage in left temporal lobe, 3 lesions in the white matter "non-specific foci" low FLAIR hyperintensity (right corona radiata and left inferior parietal lobule) and a small C2 -C3 disc protrusion.

I then asked for an MRI of the cervical spine due to chronic headaches, shoulder and neck pain.  I also had an MRI of the lumbar spine, where I already had a known L5-S1 rupture, with new sciatic pain on a different side of the body and burning numbness in the right thigh.  The cervical spine MRI showed degenerative findings on every level, mild to severe foraminal and central stenosis at various levels, and a moderate-severe bulge at the C5-C6 level. Also mild straightening of the lordosis.

I opted for PT for the lower back, and ESI for the cervical spine. the first ESI gave about 12 hours of relief (the anesthetic, I assume), and the second gave about 2 weeks of relief. The left arm numbness is gone, and headaches are less frequent.

I also had a stress echo test in June, which was normal. CRP testing was normal.

Meanwhile, I developed charlie-horse like cramping in my legs, arms and neck.  My doctor drew 6 vials of blood and tested thyroid, enzymes, kidney, liver, magnesium, creatinine CK, CBC, etc. Everything came back normal except the B12 = 148, where 200 is low.  So, I've been on 2000mcg oral B12 supplements since Oct. 6, and we'll test the level again this Friday.

Meanwhile, I've been to GI to find cause of B12 deficiency. (I'm not a vegan, don't drink any alcohol, and am not anemic.)  Endoscopy and colonoscopy were normal, and biopsies were negative for H. Pylori.  I just had a blood draw for H. Pylori to double check (no H. Pylori).  I do not have celiac antibodies (nor any sign in the above tests), and my folate levels are fine.

Lots of the B12 symptoms are disappearing - sore tongue, muscle cramps, fatigue, leg weakness, hand tremor, brain fog, vocabulary recall, concentration, etc. I was never anemic.

The problem is, I am still experiencing bouts of dizziness (hours long, 2 or 3 days per week), and stumbling when I walk.  I have been to the ENT department for vestibular and hearing tests, which were all normal.  The Dr. there thought it might be related to allergies, but I use loratadine, fluticasone and singulair for allergic rhinitis on a daily basis, and I feel my allergy symptoms are well controlled.

I did go to the ER in November due to dizziness that would have caused me to fall if I had not been washing dishes and able to grab the sink and call for my husband.  It came on suddenly, with no warning. The ER doc made the ENT referral.

The neurologist I have seen twice (most recently last week) while admitting that my brain findings are very rare, especially in the same brain, does not think they are related to the dizziness, does not think I have MS (I didn't bring this up with him, but I have to admit I was wondering), does not think the B12 is causing the dizziness, and does not think it's cervicogenic dizziness. He offered to order another brain MRI to make me feel better, but really didn't think it would show anything different, so I left it where if the dizziness continues after my B12 issues are figured out, I might ask for a repeat MRI. He told me I didn't have cancer or a stroke so I should go home and live my life. Still thinking about that statement.

My questions then are - should I get the MRI?  Would it make sense to see a spine specialist? Can B12 deficiency cause this dizziness (lightheaded - not spinning) after I've been on supplements for almost 3 months? Any other thoughts?

And, the GI has discontinued testing since there doesn't seem to be anything fatal going on.  How important is it to find the cause of a B12 deficiency?  I'm only 49.

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Avatar universal
by Octarine, Jan 02, 2009
Before I answer your B12 question, this part gives me pause:  

"He told me I didn't have cancer or a stroke so I should go home and live my life. Still thinking about that statement."

This sets off alarm bells in me.  You've had a lot of serious health issues this year and you're entitled to a more respectful assessment.  At the very least, if there's another neurologist available, it seems worthwhile to see that one the next time.  

As for the B12:  the short answer is that yes, B12 deficiency can cause dizziness.  It is very important for you to find the cause because it's not just about your intake; it's also about your body's ability to absorb B12.  The fact that oral supplements are working is good, but if symptoms are continuing I wonder why they haven't suggested either B12 injections or eliminating wheat gluten from your diet.  Either one of these options could improve your body's absorption of B12.  And the stakes are high.  Left untreated, B12 deficiency could cause dimmed vision, delusions, hallucinations, and psychosis.  

My favorite vitamin guide is "The Nutrition Desk Reference" by Robert Garrison, Jr., and Elizabeth Somer (both registered dieticians), Keats Publishing, New Canaan, CT.  This is a comprehensive review of nutrition research, very well documented with peer-reviewed literature from well-respected sources. I have the 3rd edition, 1995, so some of the info that follows may be out of date.  You probably already know that B12 deficiency mimics MS or you wouldn't be posting here!  But I'll start with the basics for other readers.

"Vitamin B12, with other B vitamins, is important in the manufacture of neurotransmitters, chemicals that facilitate communication between nerves. In this role, vitamin B12 can prevent depression and other mood disorders. . . .  Impaired fatty acid synthesis, observed in vitamin B12 deficiency states, results in impairment of brain and nerve tissue.  The insulation around nerve cells, called the myelin sheath, is misformed in a vitamin B12 deficiency, and this contributes to faulty nerve transmission." (p. 125)  

"Pernicious, or megaloblastic, anemia is the characteristic symptom of a vitamin B12 deficiency.  This condition is caused by either inadequate intake or reduced gastric secretion of a mucoprotein called intrinsic factor that is necessary for proper vitamin B12 absorption.  Intrinsic factor is produced by tyhe parietal cells of the stomach, binds onto the vitamin, and transports it into the small intestinel  In the presence of calcium, this transport complex attaches to the intestinal wall, facilitating absorption of the vitamin." (p. 126)

Causes (besides veganism and malignancies, both ruled out for you) include "many gastrointestinal disorders, such as gluten-induced enteropathy, tropical sprue, regional ileitis, . . .  tapeworm, bacteria associated with blind loop syndrome, and other disorders that impair normal intestinal function.  The need for vitamin B12 is increased by hyperthyroidism, parasitism, and pregnancy." (p. 127)

Of all the possible causes, gluten intolerance is an easy one to test and rule out and requires no further action at your "home away from home"!  The good news would be that you might be able to regain your health without further drugs.  The bad news would be that it would require very strict attention to your diet.   You'd need to either cook almost everything from scratch or shop very carefully at health-food or whole food stores.  Basically, all wheat and wheat products contain gluten, and it's often used as a thickener in foods you wouldn't expect to find wheat in.  

Fortunately, you're in MedHelp already, and there's a Celiac Disease Community:  ;

Good luck and please let us know how it goes!

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by Sarahsmom46, Jan 02, 2009
Hi J.  Hope you don't mind if I add my 2 cents worth.  The explanation of the B12 issue by Octane is superior and well said.  I understand you are taking oral B12.  Well, I have a low B12 too, 205 when last checked, and my doctor didn't want to do injections and even tried to get me to the oral form.  But I put up a little fuss because if your b12 is low and 200 is low, then there is likely a digestive reason for it.  We agreed on the nasal spray, which after 6 weeks barely brought my numbers up.  Well, now we are on the injections monthly and after 2 months I felt better.  I'd ask for the injected form as it bypasses your GI tract where I can bet your problem resides.  

Do you know if you have been given the MMA and homeocystene test?  These tests along with the B12 test give a clearer picture regarding whether the B12 is low because of Pernicious Anemia or some other reason.  Nevertheless, I I think you would find more measurable results with the symptoms especially the dizziness with the injection.  

Take good care and welcome to the MS forum.


Avatar universal
by jp518, Jan 02, 2009
Thanks to you both for the input and the welcome.  I have been tested for the gluten, I think. That was the celiac antibodies test right?  I've also had the endoscopy and colonoscopy that came up negative for anything.  I do not have stomach or abdominal pain.  The only thing is loose stools.

I was put off by the neurologist this time, as well.  He also suggested that I ask my parents what they were "doing" when I was conceived (to have the brain abnormalities).  He was very different the first time I saw him.

I'm having my B12 levels tested today for the first time since we started the supplements three months ago.   I have not had the MMA and homeocystene  tests - had read about them extensively on-line, and was wondering if I should insist.  My pcp has said I do not have anemia.  However, with heart disease risk in my family and the B12 deficiency, I think I can definitely make a case for the homocystene test. If the B12 is still low after today, I'm going to ask about the MMA.

Avatar universal
by essdipity, Jan 02, 2009
Keep on being proactive about this. You've got the right idea. I also strongly suggest you find another neuro, as that dismissive statement means he either doesn't know and doesn't care, or doesn't know and doesn't know how to find out. Either way he's a loser. And suggesting that your parents are responsible just lays another burden on you that you can do nothing about.

I'm surprised that oral B12 was ordered for you. It's nowhere near as effective as the injected kind. As Octarine has said, you may be lacking in intrinsic factor, so your body may not be able to absorb B12 through the stomach. If you have Pernicious Anemia you will need the shots for the rest of your life, but it's an easy choice compared with the symptoms you have. The cause of Pernicious Anemia is thought to be autoimmune.

If you have one autoimmune disorder it is more likely that you will have more than one, or at least the data suggest that. So if your symptoms do not all recede once the B12 problem is rectified, don't give up, but keep looking. You could have more than one issue here.


Avatar universal
by jp518, Jan 02, 2009
I told him at the time that my parents were pretty "straight-laced" and that didn't seem like something I would ask them.  I knew at that point that he wasn't going to be helpful.  Thank you for the support in insisiting on a new neuro.

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