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Neurology (Expert Forum)
paresthesia--vitamin B12 deficiency or MS?
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paresthesia--vitamin B12 deficiency or MS?
by Violet1717, Jun 19, 2005 12:00AM
I was dxed at age 32 in October 2004 with adult-onset type 1 diabetes. Just days later, I began to feel a sensation like being stuck with a pin in fingers and toes. Location moved around at random & spread in days to include legs, arms, sides, face, mouth, scalp. Occurred most often in feet & hands. Problem was not constant & for many hours of the day I was pain-free. Endoc said I hadn’t diabetic long enough for diabetic neuropathy.
The pain went away after 4 weeks & returned in April. I had two dizzy spells that month, after getting out of bed. Tests in May: EMG normal; celiac negative; B12, 322 pg/ml. Lab’s normal range: 200-1100 pg/ml. Lab noted 5-10% of patients between 200-400 show symptoms of B12 deficiency.
Am now on B12 injections, but doctor has ordered an MRI to rule out MS because the paresthesia locations strike her as atypical for B12 deficiency. She says B12 neuropathy wouldn’t likely move beyond the extremities.
Other symptoms: sore tongue, some debilitating fatigue (a bad day every week or two), shortness of breath climbing stairs. Motor symptoms: stumbling/catching toes on the ground, but only sometimes when I wear higher shoes. Ankles sometimes turn inward, causing stumbling.
Can B12 deficiency cause stabbing pain with random movement to many locations? Could B12 neuropathy appear for a few weeks, then resolve, then return? Or does this sound more like MS?
Does the normal EMG point away from this being a B12 problem? Should I be asking about other conditions that might cause these symptoms? Thanks much.
The pain went away after 4 weeks & returned in April. I had two dizzy spells that month, after getting out of bed. Tests in May: EMG normal; celiac negative; B12, 322 pg/ml. Lab’s normal range: 200-1100 pg/ml. Lab noted 5-10% of patients between 200-400 show symptoms of B12 deficiency.
Am now on B12 injections, but doctor has ordered an MRI to rule out MS because the paresthesia locations strike her as atypical for B12 deficiency. She says B12 neuropathy wouldn’t likely move beyond the extremities.
Other symptoms: sore tongue, some debilitating fatigue (a bad day every week or two), shortness of breath climbing stairs. Motor symptoms: stumbling/catching toes on the ground, but only sometimes when I wear higher shoes. Ankles sometimes turn inward, causing stumbling.
Can B12 deficiency cause stabbing pain with random movement to many locations? Could B12 neuropathy appear for a few weeks, then resolve, then return? Or does this sound more like MS?
Does the normal EMG point away from this being a B12 problem? Should I be asking about other conditions that might cause these symptoms? Thanks much.
Doctor's Answer
by CCF-Neuro-M.D.-PW, Jun 24, 2005 12:00AM
The paresthesias seem too rapid onset and offset and widespread to be related to a peripheral neuropathy like B12 or diabetic peripheral neuropahty - these conditions develop over years - even when taking no B12 it take several years to deplete the bodies supply. Just because your B12 is borderline, do not assume that that is the diagnosis. Other testing, for instance serum methylmalonic acid can help confirm. Also, you need to ask if the B12 is low, why? A cause needs to be looked for, for example, pericious anemia, bacterial overgrowth of the bowel, hypothyroidism etc
Other forms of diabetic nerve problems can occur more acutely, related to vascular compromise of the nerve, although not as widespread. The paresthesias could have another cause such as electrolyte disturbances, hypocapanea (low carbon dioxide), medications or viral. I cannot give you a specific or clinical diagnosis over the internet unfortunately so you will have to follow up with your doctor. Somatosensory evoked potentials is a good noninvasive cost efficient way of looking at the integrity of sensory pathways in the brain and spinal cord and could be a good test for you. An MRI is also good at picking up a strucutral lesion in the spinal cord or brain
EMG would not be a good test for B12, as it detects lower motor neuron problem best - B12 affects sensory responses of large nerve fibers (may be abnormal on sensory nerve conduction studies) or upper motor neuron tracts.
Good luck
Other forms of diabetic nerve problems can occur more acutely, related to vascular compromise of the nerve, although not as widespread. The paresthesias could have another cause such as electrolyte disturbances, hypocapanea (low carbon dioxide), medications or viral. I cannot give you a specific or clinical diagnosis over the internet unfortunately so you will have to follow up with your doctor. Somatosensory evoked potentials is a good noninvasive cost efficient way of looking at the integrity of sensory pathways in the brain and spinal cord and could be a good test for you. An MRI is also good at picking up a strucutral lesion in the spinal cord or brain
EMG would not be a good test for B12, as it detects lower motor neuron problem best - B12 affects sensory responses of large nerve fibers (may be abnormal on sensory nerve conduction studies) or upper motor neuron tracts.
Good luck
About 10 years ago, I went to a new gastro. Dr. I told him about MS dx. He did B12 test and I was <100 - virtually none in my system. He told me that over a proglonged period of time, lack of B12 would take on MS symptoms and could be very disabling after a long period of time (wheelchair, etc). I started injections monthly and recently had to increase to every 2-3 weeks because levels are low.
Unfortunately I moved away from that Dr. and my Dr. now feels that low 200s are fine even though the other Dr. said I should keep between 400-500. A number of yearsa ago, my levels were 1000. No one so far has been able to explain to my satisfaction why I am dropping B12 levels so low in 3 week period.
I am very interested in knowing what the Dr. says in his response. Most Dr.s now feel that I don't have MS because there have been no new lesions in over 10 years and no additional symptoms of MS. Unfortunately, they recentlly diagnosed fibromyalgia and with fatigue, memory loss, etc. I have had to go on disability. From my encounters with doctors, the line is often "fuzzy" between the 2 unless you have other, definitive MS positive testing (which I didn't).
Good luck!
Also speaking from my research, I would URGE you not to settle for levels in the 200s. With symptoms like yours, why settle for a cure with a 10% chance of failing? I wish you the best of luck.
According to what I have recently learned, low B12 can be very dangerous. Normal levels may be found in blood, but not in tissue. It needs to be carried from the blood to the tissue. Sometimes it cannot make it's way to the tissue because of lack of intrinsic factor in gut. Intrinsic factor is the vehicle that transports it to tissues. This is also a case of malabsorbtion. I also have alot of the same symptoms, and take 2000 mcg's of B12 just in case this is my problem. I have had gastro problems in the past, mainly ulcers and have body wide burning & prickiling? No real diagnosis yet. I have learned that people with symptoms like ours, should take a multi B complex, and at least 1000 mmcg's of B12 methylcobalamin form, while we are seeking a diagnosis.
I really beleive my levels need to be higher. My Dr. does not. I will be retested in a couple of weeks and will see what the levels are. I definetly believe in what the first Dr. told me about staying in 400-500 range. My present Dr. says no need. Since B12 isn't toxic and I feel so crummy, I don't really understand his resistance. Since I don't know WHY it is dropping and he doesn't know either, I don't really know what todo next. I have been to every specialist. I am considering Mayo clinic to get checked head to toe-
Any other thoughts and ideas are appreciated. Fatique is debilitating no matter what the cause and it is not really understood by others (go to bed earlier, etc).
Linda
thank you
After starting ionjections, I felt better fairly quickly. I got so I could tell when time for shot. Unfortunately with all thge other medical issues I am dealing with, that doesn't happen. But then again, my level was only at 224 last time tested.
I made my elderly mother and father be tested for B12 and both were low. Now my mother is getting injections every 2 weeks which hopefully will go to once a month. Unfortunately my father passed away 1 1/2 years ago and I don't think that played a part. I read somewhere that it could be genetic but I can't find it now.
I feel so much better that I am not alone with this craziness although I am sorry that ALL of us have to deal with this at all. It is so frustrating and so intangible. Will be waiting to hear more info from anyone.
LindaS
love, steph