Symptoms of B12 deficiency?

[Penpen]

I have had various symptoms for two years.  Have had 2 clean MRIs, and many other blood tests including thyroid, lupus and lyme.  Only B12 showed significant, it was 126. Have been receiving B12 shots for almost 2 years with no result.  Am currently seeing a primary care doc and neurologist who are working closely with me.

Symptoms started with soar throat, dizziness and tight chest.  Now I wake up with my mouth and tongue burning, leg and arm burning, leg and arm weakness, major leg stiffness and soarness.  Lower back pain, unsteady gait as if i am standing on a boat and weird sensations all over like water droplets on my body.  Could B12 deficiency cause these symptoms?  If so wouldn't 2 years of treatment be enough time to see results. My primary doc attributes symtpoms to B12 deficiency and my neuro does not.  

I realize you are not here to diagnose and assure you I am working with very good doctors who are very helpful, I am just concerned that I seem to getting worse even with B12 shots, good diet, yoga and frequent doctors' visits.

My symptoms seem to wax and wane, one day the stiffness will be so bad I can barely walk and the next day just residual stiffness.

Thank you for any thoughts.
Penpen

[l,s mom]

Do you use Canola oil. There is a lot of info online. It is made from rape seed and is very toxic.
Another rare disease that might be checked into is porphyria. IT can have a lot of the same symptoms as lupus. It is a very strange illness that can effect both neurologically and mentally.
I hope this helps.

[Amanda Wolfer]

Thank you for your concern lady!  I have done so much research I almost feel like I am more of a professional than the docs that we have seen.  I am very aware of the neuro-intoxicating effects of aspartame and have warned my mother-in-law against drinking so much crystal light, but she thinks I am crazy!  My husband has not had a seizure for over a year now and I am very thankful for that.  I dont know if he has seizure disorder or not given his circumstances they were induced by withdrawl from meds and initially encephalitis of some sort.  Encephalitis is a generic term for anything that can cause swelling or inflamation in the brain.  Because his csf had an elavated white count the docs said he had arbo-viral encephalitis.  The virus should have run it's course since July of 2000, but my husband continues to have serious problems.  I believe that no one  really knows what it is and that it was a mis-dx.  I really dont know what elce to do, I am not even sure what I am searching for anymore, other than a dx that will help us get the proper treatment.  My husband doesn't like diet anything, including soda and he loves his red meat and potatos!  So, he is on a high fat diet by choice.  Which concerns me because he may have very high colestorol, but I can not get him to exercise, he says that it is just too hard, and it doesn't help him feel beter.  No pain no gain is my response, but he has become very obstinate in his frustration.
Thanks again, Amanda

[Concerned lady]

Have you checked into the KETOGENIC DIET for the seizures? This high fat diet seems to help repair the myelin sheaths around nerve cells, and has helped MANY epilepsy/seizure patients. "Myelin" is made mostly out of cholesterol, and is necessary for proper nerve conduction.

Have you tried seeing a really good acupuncturist, because good acupuncturists treat the whold person (one type of "holistic" health), not just one symptom.

One acupressure point that sometimes stops seizures is located just above the middle of the upper lip.

Also, avoid vaccinations, because many have had seizures and "encephalopathy" as a bad side effect of vaccinations (immunizations). For more info on this, go to http://www.909shot.com

And definitely avoid Nutrasweet (also called "Equal" or "Aspartame"), because as nutrasweet breaks down, one byproduct is "methyl alcohol" which has caused seizures in many people. Nutrasweet is found in "diet soda pop" and many other packaged foods and drinks.

And do read Rose's comments and others, that was mentioned here.

Good luck, and I hope he gets better soon.

Sincerely, Concerned lady

***@****
http://cantbreathesuspectvcd.com

[Amanda Wolfer]

Well his sypmtoms started right as he was recouping from shoulder surgury, he began having tremors in his right arm and hand.  We thought it was weakness from the surgury and he did physical therepy.  When he got his strength back it worsened.  He was a mechanic so it was very frustrating for him.  The ortho wanted to do surgury again so we went for another opinion at the GP who we see regularly.  He refered us to a neuro after doing many tests and finding abnormalities on an MRI w/contrast of the brain.  They were very serious, but my husband was just relieved that he found something.  By this time he was having panic attacks.  Dazing while driving and any other time.  The MRI showed Enchancement in the THalamus and Basil Ganglia.  Our GP thought for sure that he Has a Mitochondrial or metabolic disorder that was triggered by the anestesia during his shoulder.  We scheduled a battery of test for the following monday after we got the results and on saturday before he collapsed unconcious and after began convulsing.  He was taken to three hospitals in 12 hours and finally we ended up at University Hospital in Cincinnati.  on the 7th day he woke from coma and was totally out of it.  on the 10 day they told us that they thought he had viral encephalitis.  We questioned that because his symptoms began 5-6 months prior to this dx.  But the team of specialists said it was possible that he had been fighting it off for that long.  So we went home and started what we thought was recovery.  He was hospitalized about three weeks later because he was vomiting horribly and had the worst vertigo ever.  Three days later we went home.  IN the meantime the neuro's at UC were changing his meds on a weekly basis and I couldnt tell if the problems he was having were the brain injury or the meds, it was terrible, he was so confused and had no idea what was happening to him, (still doesnt).  His neuro at UC took him off all of his seizure meds within 3 days he was drug free.  On the sixth day he had seizures and was status again.  At this point he was back on meds and we switched doctors at UC.  Needless to say I was pissed when I learned that seizure meds have to be weened very, very slowly.  After switching docs we went through meds like crazy again. The new neuro only wanted to see Doug 1 time every six months.  He was still having so many problems, new old, and strange problems. Vertigo, double vision very unsteady gait, confusion, anxiety, Horrific hallucinations, severe tremor the list just goes on and on and these symptoms come and go on a daily basis.  So I Got another neuro for a third time.  He seemed to be helping Doug alot.  He had him in physical , occupational, and speech therapy.  Doug began to improve.  He had meds for the tremor and he was physically improving with the therapy.  Then the insurance said no more therapy.  Without Doug working, our income is very limited.  So we had to stop.  Within a few months he began having more problems, I insisted to our neuro that i felt this wasn't encephalitis from a mosquito.  THat Doug's symptoms kept changing and worsening and so on so, He conducted more tests at my Request.  The MRI shows some things but we dont know if there are more leisions on his brain or if they are the same as this time last year.  We go back to the Neuro on the 1st of Nov.  As far as the blood tests go, he told us to take the results and go back to the GP cause that wasnt his area.  Gp wants us to see a rhuemy.  This all started after surgury in Nov. 1999.  Tremor began in January 2000 and in July of 2000 he had the seizures and was hospitalized.  Since then we have been to numerous docs and almost every hospital  around on many different occations.  I am getting very tired and loosing faith in the medical field.  Doug has practically given up.  We have been to Phyciatrist and Psycoligist and no luck...last psycolisgist said that he cant be helped.  So, i took him to a Neuro-Psycoligist last week and he had an extensive evaluation.  We will find out those results in a few weeks too.  So far it seems like I am telling the docs what to test for and how to treat Doug because they are all stumped.  I really feel like the docs are so busy refilling rx that they dont have time to research and treat special cases the way they should.  At this point, I feel like Doug has something very serious going on and I have no clue what, but the longer this problem goes on untreated the worse the prognosis.  I know this is alot of reading, but this is what I am dealing with. If anyone reads this and has any suggestions or comments that might help, I would love to hear from you.  Thanks again Heather!
PS I went to that sight and it was very familiar to me, I am gonna go back and search some more, but I am certain that I have been there before.

[Penpen]

No problem:  another good neurology website is the one below.  For the B12 deficiency and the symptoms I listed you can go under Peripheral Neuropathy.  It is a very helpful and supportive site-but it is not one where doctors answer your questions. Do a search for your husband's symptoms or if he has the similar symptoms to what I have-ie burning and stiffness go to Peripheral Neuropathy.

Good luck-I know it is frustrating!

Penpen (aka Heather)


http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi

[Amanda Wolfer]

My husband has many of the same symptoms that you describe only he also has memory and cognition problems as well as severe anxiety and regular mental confusion.  He also had a metabolic screening and B-12 screening at my request and the results showed a high B-12, around 812. I was just wondering if you knew any effects of too much B-12.  He also showed a +ANA and some other findings that the doc feels are insignificant.  I really think that they are though.  We have regular visits to the neuro and GP and now we have been refered to a rheumatoligist and gastrointeroligist.  I just need some advise and I have been unable to make a post.  Sorry to but in on your problem!! Hope you get some answers that are acceptable soon! In the meantime I will keep trying. Thanks!!!!!

[Penpen]

To answer your question about Too Much B12, from my research there is not such a thing.  They even go as far to say that B12 is non toxic.  When I started treatment with B12 shots I got my level up to 2000 so I think his B12 level is great.  There is a local expert, Rose, she is at the website i posted and usually under Peripheral Neuropathy, she can and is willing to answer any question about B12-she and the others are wonderful.

I too have the anxiety and my body (at age 31) feels like an old womans'.  I hope you are doing things for yourself to cope too.

Heather

[Amanda Wolfer]

Just wanted to thank you for the info.  I have tried searching his symptoms and he has so many that it is very difficult to do.  His problems started over a year ago and have worsened severly.  He has even been in a coma and had massive grand mal seizures.  He cant even tell me what is wrong most of the time and I am very scared and frustrated.  The docs keep saying he probably contracted arbo-viral encephalitis....but he has no antibodies for any in the convalecent stage and had none in the active stage at the time.  He is only 26 yrs old, but he seems like an old man physically and a child mentally. I am just running out of things to do....maybe I will pack him and all of his medical records and go on a trip to Cleveland!
Amanda

[Penpen]

What a nightmare!  You should really go to that website I posted.  They also have a great neurology program, I think it's in MA.  Is he still seeing the doctors?  If you go to that site I posted you will be amazed at how many people are having these strange symptoms.  People are very supportive and many have been on the site for a couple of years and can direct you to the correct room.  There is a General/Rare disorders which is a "catch all" for anyone who doesn't know what is going on.

I found for my symptoms it helped to be persistant and a bit pushy-that way they will at least keep testing for things and refer you to other specialists.  But I found my best idea was to get a counselor.  It doesn't mean there is anything wrong with you, and they could help you sort out what is going on-mine helps me role-play before I go see my doctor so that my requests come out clear.  They can also be an advocate for you and contact his doctors for you if you feel that you are unable to deal with it.

How did all his symptoms start?  Do they have him on antiviral meds?  Is he currently in the hospital?  

Heather

[Penpen]

Doctor,

Thank you for your comments.  I see my primary doc in a week and we are going to discuss where we go.  I had a brain MRI but what kind of test can they do to look at spinal cord problems?

I started taking B12 shots approx. 3 months after the onset of symptoms.  Does your body go thru spurts of being symptom free and then the symptoms come back when you are healing?  Is that even possible, or is healing a more steady smooth process?

I did have a test for rheumatoid arthritis and that was negative.

I am also willing to accept the fact that my symptoms could be bought on by sever stress and anxiety.  I am also working with my primary doctor on this and a counselor.  Can stress and anxiety cause these types of symptoms?

Thank you so much for your help,

Penpen

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

Sorry to hear about all of your symptoms. B12 deficiency can certainly cause some of your symptoms such as the gait disorder, stiffness, and sensory disturbances in your arms and legs, but I'm not sure it can account for everything. Sometimes, if there is spinal cord damage from the B12 deficiency in severe cases, the effects are unfortuantely NOT reversible with supplement. Rather, it simply stops the progression of the disease and you're stuck with the present symptoms. The patients who respond best are those whose symptoms are caught in the first 3 months after the onset of gait disturbance. Otherwise most will respond within a year. Other blood tests to show whether or not you have adequate B12 are homocysteine and methylmalonic levels which should be low if your B12 is ok.

Further workup of other diseases may need to be considered such as the rheumatological diseases. A more complete lab panel that helps to rule out other diseases besides lupus may be needed. BUt this is something you have to talk to your physician about.  Finally, an EMG may be helpful to evaluate the integrity of the muscles and nerves in your limbs to see why you're experiencing burning sensations and muscle stiffness. Again, talk to your doc. Best of luck.