paresthesia--vitamin B12 deficiency or MS?

[Violet1717]

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.

[CCF-Neuro-M.D.-PW]

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

[lchelsemom]

Wow!  I had pretty much same situation!  I was diagnosed with MS when I was in my mid-30's.  I had numbness/tingling in one arm and opposite leg.  2 Spinal taps normal.. 2 areas of plaque on brain.  Extreme fatique!  I would drop things, feel like my feet were dragging etc.  I went to 4 or 5 neurologists who said they thought it was MS.  Went to MS specialist at U of Miami who said he thought it was probably MS.

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!

[Violet1717]

Hi Linda, thanks for your comment. I'm sorry that your B12 deficiency went undiagnosed for so long--and that you may have gone through the trauma of a mistaken MS diagnosis to boot! My understanding is that B12 def can cause lesions, particularly on the spinal cord but eventually on the brain as well if untreated too long. Perhaps your lesions came from the vitamin deficiency.

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.

[aussie99]

Hi Ladies,

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.

[daisy23]

You definitely should continue taking B12 injections, as the others stated, having low levels for a prolonged time can cause permant neurological damage.  I, myself, began B12 injections about 1.5 years ago.  My doctor informed me that I would need to continue with the B12 injections for the rest of my life, as once diagnosed with this deficiency, one rarely can go without these injections.  Settling for B12 OTC vitamins aren't as effective as injections, especially if your deficiency results from an inability to absorb B12 into your blood stream.  Continue looking for a doctor that will listen and give you what you need.  Good luck!

[lchelsemom]

Thanks everyone for your comments!  I feel somewhat validated since most don't understand the effects these things have on your day to day life!  Thankfully the Dr. that found B12 did extensive biopies, etc. and I do have a malabsorption problem (lack of intrisic) so orally won't do much for me.  

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

[professionalfemale]

Hello I found out about a month ago i was vitamin b12 def. My level was at 194. I was just wondering from someone if this is a low level. Also how long does it take for the injections to start working. Today was my 4th one in a month. I really dont feel any better. Also the muscle spasms i am having seem to be getting worse. I have the spasms all over my body. (which is annoying). Is this common for low b12 my doctor doesnt seem to give me answers when i ask him. My sypmtoms are alot like those who posted. Weak, fatigue, headaches, dizziness, flu-like symptoms. I had an mri, of head and spine didnt seem to think i have ms but Lord i just feel like i am getting worse. I hope to hear from someone soon.
thank you

[lchelsemom]

Definetly 194 is too low!  At that level you will most likely have neurological sysmtons.  If you see bottom of lab report, it will probably state that.

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

[professionalfemale]

Hello, thank your for the reply. I def am having neurological symptoms especially the spasms all over. But i wasnt for sure how low was low. I never seen the whole lab report from doctor just the number really quick when they showed me. I start once a month next month but i hope that isnt too long for my next one. Do you know if you are low in b12 you can be low in b6 as well. I asked them if they could get me a blood test for that as well. Waiting on the response. Do you have any idea why we get so low? I had no idea i had a def but couldnt understand why i get so weak in my limbs..it was scaring me. Thank you for all your support.
love, steph

[Violet1717]

Among the things I've read about B12 is that when you start injections you sometimes feel WORSE before you get better. This is because the brain has to readjust to the presence of B12, and wacky symptoms result. Then improvement, hopefully, begins.

I would add that my course of injections is more frequent than yours. I'm getting 1 per day for 4 days, then 1 per week for 4 weeks, then 1 per month ongoing. I wonder if you're getting enough B12?

Finally...for everyone...there is an AMAZING forum on all things neurological where I've learned a lot the last couple days. A long & VERY useful post on B12 is found here: http://brain.hastypastry.net/forums/showthread.php?t=57840

There are boards at the same site for pretty much every neuro issue you can think of, and then some. Go read and good luck to all of us.

[professionalfemale]

Hi there and thank you for the information. May I ask how low you was when you was diagnosed? did you ever get muscle spasms all over body or am i just one of the special ones..(sad). How was your b6? I would like to talk more if you have time. My messenger is ***@**** please add.

[Violet1717]

I'm not on Messenger, srry :) But I'll be checking here a lot. My B12 level was 322, not a definitive low diagnosis. That's partly why I'm having an MRI. I have some muscle aches/feelings of weakness, but not a lot. I have read though that aches and tremors are very common with B12 def. Keep in mind that you aren't alone, OK? Take care.

[aussie99]

Hi,

I have read that magnesium helps with muscle spasms considerably,& they should subside after 3-4 days with a high dose. I am just not certain of the dosage though. Normally the recommended dosage on most vitamins, is typically a low dose. I also know that as far as B12 is concerned even people who test within a normal range, or even high can suffer neurological illness due to the B12 not being transported from the blood to the tissues. So your blood can test high for B12, but your tissues are deficient due to a lack of intrinsic factor in the gut.

[professionalfemale]

Thank you both for the insight i will def look into this. I wasnt sure about b12 just new i was extremely low. I hope your mri come back normal and you start to feel better. Thank you again.

[lchelsemom]

Has the Dr. responded to your original question?  I was interested to hear his answer,

[lchelsemom]

Curious to know what type of Dr. is treating your B12 defiency?

[Violet1717]

No answer yet. I hope it hasn't been skipped by accident.

The doc treating me for B12 deficiency is my primary care physician. The reason she tested me for it may be that I asked her to--I had done research before my appointment and knew I needed testing for celiac and B12 def. I'm not sure whether she would have pursued that path had I not asked.

I've also learned since my first post here that she was mistaken about B12 symptoms not moving out of the extremities; they do advance into the trunk at times (this is according to a Mayo Clinic article I read, also a very knowledgable patient at Brain Talk). But what B12 deficiency does not do, as far as I can learn, is produce symptoms that vanish for a while the way mine did after the first attack in November. The symptoms stay the same or worsen until you replenish the vitamin.

That means B12 might not be my problem after all, and that's one reason I'm so anxious for my question here to be addressed. I had an MRI today, so the results of that may provide additional information.

Have also done some fascinating reading on how chronic Lyme disease can mimic MS even in the appearance of lesions on an MRI. There are a number of overlapping symptoms as well. And Lyme can produce symptoms that come and go, again like MS. Since I live in Lyme territory and even had a dog who died of Lyme a couple of years ago, I'm very curious about this possibility. As many as half of Lyme sufferers have no recollection of a tick bite or the characteristic rash, supposedly. So many people who don't think they could have Lyme could.

[lchelsemom]

OH NO!  Not another possible cause of symptoms!I wish no one else had to go through this but at least I know that I am not alone with my confusion about MS, B12. It just bothers me that I can't get answers about B12 levels and what is causing my levels to go down and why my Dr. doesn't think it is significant.

Anyway, good luck with MRI.  One suggestion - when I first received diagnosis (MS) the Dr. gave me the report to read (that is how I found out).  Anyway, for about 20 years I envisioned my brain full of lesions based upon the report I read.  About 5 years ago I asked my Dr. if I could see MRI and I only have 2 lesion. I was really upset that so many years went by and none of the Drs. I saw (and there were plenty) thought to tell me that to help reduce my anxiety. Y0u might want to ask to see MRI.

[clickerz]

I dont know if what topic it may fall, from the last weeks i feel a flu like syndrome (got my temp and its normal 36.4  degree to 37),weakness of arms and knee esp. after moving a bowel. I also feels weak,exp. shortness of breathing from time to time and restlessness is it also a sign of b12 defeciency?? im male and have gone some emotional problems a month ago (feels nervous,angry etc.).

[Violet1717]

Linda, thank you, that's very good advice about the MRI.

Clickerz, hi, I'm not an expert on any of this. If you start a new thread by posting a question you may receive an answer from a neurologist. In the meantime, good information on B12 deficiency can be found at the Brain Talk forums (see the link in my message a few above this one) or at these links, which are all articles written by medical professionals:

http://www.aafp.org/afp/20030301/979.html

http://www.emedicine.com/NEURO/topic439.htm

http://www.labtestsonline.org/understanding/conditions/vitaminb12.html

Good luck to you!

[lchelsemom]

Hi - just found another site for info on B12 - Mayo Clinic.  You need to search for pernicious anemia.

Linda

[Brooklynn]

Hi

I was diagnosed with B12 Deficiency over a year ago.  At that time, my level was 75.  After having monthly injections for a year I now have my levels up to 245.  My docter seems to think that is good, yet I still have a lot of symptoms, like weakness and pain in the legs, numbness, twitching and muscle cramps.  Does anyone know if these things eventually get better or can expect to have these symptoms forever?

Thanks

B

[Brooklynn]

Just one other question...actually I have many, but one neurologist thought I might have fibromyalgia, I don't buy that, yet no one has given me a real name for what I have.  I have seen words like pernicious anemia, and peripheral neuropathy.  Are these generally what results from B12 deficiency?

Thanks again

B

[professionalfem]

Hello I was reading your post and I have so the same symptoms as you. I found out about a month and half ago I was vit b12def my level was 194. I started my shots for 4weeks with the shots. Well I am not sure what my level is after 4weeks but I havent had a shot for 2half weeks and now all of a sudden my muscle spasms (all over body) has come back bad including major headaches in back of head and fatigue and weakness. It is driving me crazy. I am getting worried about this. Do you have any other symptoms? Do you get full body spasms as well. I would like to talk to you further upon this. Also if you have b12def can your tongue get sore like kanker sore feeling i know that sounds weird but i have been getting that and acidy stomach. Thank you and hope to hear from you soon.
sincerly,
ss

[Brooklynn]

Hi

I sometimes have spasms in different parts of my body ie: legs, hands, face, but never full body spasms.  As for my tongue, as a matter of fact it is hurting right now.  I get things I guess they are ulcers, and my whole mouth hurts.  It makes it difficult to swallow and to talk.  I think the worst thing is the burning in my legs & feet.  It sometimes feels like they are on fire.

[jimiy]

Could someone tell me if all those with b12 deficiency have also disordered red count blood? cos i learned that his deficiency must show itself in abnormal red blod cells screening!  maybe someone can enlighten me on this aspect. thatn you!