My B12 nightmare (severe neuropathy)

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My B12 nightmare (severe neuropathy)

Postby Ltldogg » Sun Jul 19, 2015 10:22 pm

I posted this in another thread about B12, but was already intending to make my own topic to tell my tale. This is going to be a long read (and this is only the medium version):

I just recently discovered that I was very severe in absorbing B12. I had minor symptoms for the last 5 years, but nothing that added up. These symptoms included sinus infections 3-4 times a year, poor digestion, poor sleep, mouth ulcers, sore spots on my tongue, dry skin around nails, dry lips and the worse was an occasional pain in my right hip/thigh area that could be very severe for a few hours or even over night. Now bare in mind that I am one of the most strict McDougallers you will ever find and my numbers have always backed that up. I have had a cholesterol of 95-120 for about 8 years and when ever I get a super chem panel done everything is always in range.

Then, back on March 12, while taking antibiotics for a sinus infection that turned into a bronchitis cough, I woke up that morning with severe pain in my right flank, up under my rib-cage; it felt like it was in an organ. I had this for 10 days and it would eventually shoot pains up to my right shoulder. I couldn't sleep but on my back, which I cannot really do; so I didn't get hardly any sleep. I went to an Urgent Care for x-rays and they were negative. Blood work showed slightly elevated WBC count, but nothing else. The doctor prescribed Ibuprofen or naproxen, which only helped marginally.

On the tenth day, I woke up and the sharp pain in flank and shoulder was now dull, but I had pain in my right pinky toe. Over 5 days, the pain was very severe and every day my right foot swelled further and further until you could not see any of the ligaments to my digits. I had already been going to see my PCP at this point and she thought it was Gout and had blood and urine drawn. Some numbers were off, but nothing major and nothing pointing to Kidney problems or anything that would indicate I had Gout. The pain was so severe I couldn't sleep at night for 3 nights straight. I was prescribed Gout medicine and a after 2 days, the severe pain was gone...

...only to have moved to another area. I woke up on this morning and my entire neck, upper back and back of my head were in severe pain, stiffness and throbbing. After a 2 visits in consecutive days to my PCP, she had me admitted to a hospital. I was in the hospital for 5 days and had my blood drawn and tested about 10 times for different things, had a complete 3 hour MRI done on my brain stem and full spine, had multiple x-rays, ct scans, spinal tap, ultra sounds, urine cultures, etc. Nothing major was found. Several times my lymph nodes were swollen in multiple areas, my WBC was slightly elevated and had some other biomarkers that were slightly off. I was seen by several specialists but they eventually gave up on me and told me to go home, even though I was in a huge amount of pain. They drugged me up with tons of different pain killers, NSAIDS and other drugs and actually induced severe migraines, constipation and then diarrhea.

I went home and laid in bed for days and stopped ALL meds. I lost a ton of weight and was down to 114 at one point. The drugs messed up my digestion so much that food was going straight through me. Eventually the migraines went away and my digestion restored. After taking a couple of weeks off from the doctors, I continued back to my PCP and she had me go directly to an infectious disease doctor who tested me for anything and everything they could think; even west nile, rickets, all STDs, Lyme disease, Valley Fever, etc. Everything was negative, but I did have certain biomarkers and matching symptoms for Ankylosing Spondilitis. I was referred to a Rheumatoid and Arthritis specialist who immediately dismissed me after looking at all the scans, blood tests, x-rays, mri, etc. It came to a point where my Infectious Disease doctor said she had nothing left to test for.

During this whole time, my neck, head and back were still in major pain. I couldn't drive if I wanted to because I had maybe 5% mobility in my neck turning left and right and maybe 20% up and down. I could hardly sleep and only on my back. The severe pain was slowly leaving my back, head and neck but moved to other areas, especially in both sides. So much so, that the doctors and myself thought I might have a GI disease like Crohn's. I was referred to a GI doctor and had both an upper endoscopy and colonoscopy performed. There were slight signs that warranted the next test, a CT Enterography. Again, slight signs that warranted another test, a Small Bowel Capsule (camera in a pill that I swallow and takes pics of my entire GI tract). This test came back negative and convinced the Doctor that I did not have any GI or digestion disease. During this whole time, I had a couple different episodes of severe pain on one side or the other. So much so that I could not walk, stand up, sit down, turn, move, breathe, etc without severe spasms. Again, very little to no sleep for days and days.

At this point I was at a lost. My PCP gave up on me and yet I was still in a ton of pain and it was moving around every couple days now to all the sites I already listed. I even had a stint of 7+ days of severe blurred vision in my left eye that eventually cleared up on it's own, but has left moderate redness in that same eye. After a couple more weeks, the regular severe pain went away but I was still in pain every day. My entire torso was always tight and stiff with one of the major areas I already listed as the focal point of pain. It was like a zero sum game.

After missing almost 1.5 months of work I was able to start again; at first working from home and then eventually back in the office. Slowly and steadily my pains felt like they were getting less and less, but then some days it would be pretty bad again. My right foot that had the Gout like symptoms, never fully had the swelling go away and has been sore the whole time on the bottom.

Alright, getting closer to the good stuff, but first a couple more details:

1. The digestion issues that I had for the past 5 years are atypical for a Vegan who only eats a WF, Plant Only, high fiber, low fat, low protein, low salt diet. I would only have a BM about every 3 days and so I would often look pregnant and have bloating, gas, etc. I tried Jeff Novick's and Dr. McDougall's elimination diet many times and the problem never improved. This last time, was right in the middle of me getting the severe symptoms back in March. In fact, I was working directly with Jeff. Ironically, the antibiotics actually helped my gut and digestion; also ironically, I'm guessing (will never know for sure) that the antibiotics caused the severe symptoms (read further below).

2. I had complete blood and skin panel allergy tests done and everything was negative.

3. A few days before my severe symptoms started, I had gotten my blood test done which included a B12 Serum. I posted this in a thread on these forums (viewtopic.php?f=1&t=47307). Everything was perfect, including my B12 Serum, which was 625 pg/ml.

4. I broke my left foot in two places (navicular and cuboid bones) and had a moderate contusion on my ankle, playing sand volleyball back on June 18th, 2014. After getting out of the walking boot 90 days later, I have experienced pins and needle pains in that foot, but not in the area where the breaks were. These pains are down by the digits.

Okay, now to tie this to B12:

Back in Feb of this year, I contributed to another thread here about my B12 intake and pointed out how my numbers have been fine for years when I self-test (viewtopic.php?f=1&t=46126&start=30#p482663)

Fast forward to a few weeks ago, after giving up on the medical route I decided to live with the pain and hope it goes away. I already follow this WOE strictly and resigned to self healing. However, every day living with the chronic pain (4 months straight) and the memories of the severe pains that had me in the hospital 4 times (I only mentioned the 1 long stay above) and not being able to sleep, eat, etc, I couldn't let it go and have been reading and searching based on my symptoms (since this started actually). Over and over B12 deficiency kept coming up and I have so many of the signs.

Not once in 2 months of doctors appts, hospital stays, over 25 blood draws, etc, did any doctor ask me or test for B12 deficiency. I am very up front about being a strict Vegan and this WOE in particular. I have a huge Vegan tattoo on my right forearm and all my doctors, specialists, etc knew.

I read and re-read every post I could find on B12 from Jeff and Dr. McDougall and watched every video and post from Dr. Gregor. This is when I learned that a B12 Serum test is not enough to determine B12 deficiency. I went to a lab on my own (in Arizona you can get any test you want done without the need for a Physician request) and had my urine MMA tested, homocysteine and full thyroid panel. Thyroid and iodine are perfect, BUT as you should have already guessed, my MMA and homocysteine levels were off the charts elevated.

What does this mean, well I am no doctor but based on what I have read from many many many doctors, I have an anemia where my body does not absorb B12. So I immediately found a "Weight Loss Clinic" where you can get B12 injections. They had a special 10-pack where they will give you a pre-packaged syringes to take home. I bought the high dosage of 2 CCs (2ml/ 2000 micrograms/2000 UGs of methylcobalomin). After the first injection, within hours the stiffness and pain around my midsection went away and has not returned. That was a huge relief. I could once again bend over, stand up and twist my body without pain, moaning and groaning. However, I still had the other pains. I have now taken the same injection every day 5 days in a row. Every single day the pains in my body have gone down (at this point way down). I only have slight soreness in the bottom of my right foot and very minor pins and needle pains in my left foot. ALL OTHER AREAS OF PAIN ARE GONE!

I have read everywhere that there is no unsafe upper limit for B12 and also for people that have severe deficiency and symptoms, they receive daily injections until symptoms do not improve. This is what I plan to do and then I will do a weekly injection for about a month and finally I will do monthly injections for the rest of my life. I will be re-testing my MMA and homocystein in the future, but I don't need them to tell me I have improved.

A few more points:

1. It will be a long-time before I know if I can fully recover from the severe neuropathy issues I experienced and I hope I can, but it might be too late.
2. My other symptoms have cleared up as well. Immediately my sleep has been better, mouth ulcers are gone (but I don't have them all the time so TBD if I get any more), tongue sore spot went away (TBD long-term), etc.
3. I have been depressed over the last 4 months but I thought it was from the chronic pain and lack of sleep, which it might have been. I eat super healthy and get at least an hour of sun every day and have normal Vitamin D levels, so I was not sure why I would feel depressed. However, depression is another symptom of B12 deficiency and that has gone away also.
4. As I mentioned above, taking the Antibiotics back in March right before and as the severe pains started, fixed my digestion issue I was having although the meds I was put on in the hospital stays really messed it up again but after stopping the meds and getting them out of my system, my digestion has been great. After working with Jeff Novick, I started taking a very high level vegan probiotic available from Sprouts, to help counter-act the antibiotic.
5. I will never know for sure, but believe my mild to moderate symptoms of B12 deficiency turned severe from the long antibiotic use back in March for the Sinus infection and bronchitis. After all, antibiotics kill all bacteria, even good bacteria and B12 is a bacteria.
6. I will also never know for sure why my body will not absorb B12 through ingestion, but if I had to guess I would say it was from the first 30 years of my life of being an extreme meat eater and also from about 20 years of past social drinking, sometimes heavy.

I know this was a long read, but I hope it will be helpful to others and at least serve as a cautionary tale of an important issue. I know I have left out some minor issues, but this is the gist of my story. I recommend following Jeff's advise (viewtopic.php?f=22&t=34769&p=352306#p352306) and get tested with the following: B12 Serum, Urine MMA and Homocysteine. B12 deficiency has many different symptoms and levels of severity. It is better to error on the side of caution and B12 supplements are very cheap and safe.

Sincerely,
Scott
Last edited by Ltldogg on Mon Jul 20, 2015 6:23 am, edited 1 time in total.
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Re: My B12 nightmare (severe neuropathy)

Postby Daydream » Sun Jul 19, 2015 11:26 pm

Scott, oh my gosh! I'm glad you are feeling better after finding out what the problem was. I hope you make a complete recovery. Thank you for sharing your story.
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Re: My B12 nightmare (severe neuropathy)

Postby Cupcake » Sun Jul 19, 2015 11:43 pm

Scott,

I am glad you got it figured out and got treatment (B-12 injections). I am sorry it took so long to figure out. Once again, doctors do not always know enough about B-12 deficiency (pernicious anemia) to look for it. This was certainly true in my case. I became B-12 deficient when in my late 30s, eating a rather healthy version of the SAD diet. My symptoms included: tongue/mouth rashes, pains/numbness in my hands and feet, confusion and depression. With a couple months, I needed a cane to walk, I was in so much pain. I was tested 6 ways to Sunday; you name it, I had the test: MRI, EKG, spinal tap, etc. etc. Finally, the doctors ruled everything out and figured out it was a low B-12 level. Note that my B-12 level was only "low-normal," never "below-normal." But daily injections for a month (and then weekly, and now monthly for the rest of my life) basically cured me.

Glad you've figured it out. I agree that everyone who eats little-to-no meat should take a B-12 supplement. I got pernicious anemia even while I still ATE meat. Don't risk it. It ain't fun and it ain't pretty.
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Re: My B12 nightmare (severe neuropathy)

Postby healthyvegan » Mon Jul 20, 2015 12:43 am

Thank you for sharing your story, you couldn't have posted at a better time. been trying to get a strict McDougaller I know who is similarly falling apart to get b12 shots. going 1st thing in the am
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Re: My B12 nightmare (severe neuropathy)

Postby dteresa » Mon Jul 20, 2015 6:48 am

I am so glad you found what was causing your pain. And horrified at all those tests you had to go through. How many people have symptoms like yours and never find out what the problem is? Your story was very encouraging about following this woe and about adequate B12 intake and also what might be, in the end, a test to do first. You are right. A doctor should ask the right questions about diet, especially if his patient is a vegan. I just made a doctor's appointment which I have put off for months because I do not want to go though a whole slew of guess work testing.

Your posts are always to the point and informative and I am glad you are on the group.

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Re: My B12 nightmare (severe neuropathy)

Postby viv » Mon Jul 20, 2015 7:06 am

I'm so sorry for your suffering, you have been through hell and back. Thank God through sheer tenacity on your part, you stuck with it and found a solution and now sharing very enlightening information.

What dosage of B12 did you take prior to your becoming ill?

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Re: My B12 nightmare (severe neuropathy)

Postby Drew_ab » Mon Jul 20, 2015 7:15 am

Thank-you so much for sharing your story. I am trying to navigate a few ongoing issues, and I practically lived on antibiotics for the first 25 years of my life. That must have been a very scary experience for you. I'm so glad to hear that everyone seems to be improving.
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Re: My B12 nightmare (severe neuropathy)

Postby Ltldogg » Mon Jul 20, 2015 8:44 am

Thank you everyone!

dteresa wrote: Your posts are always to the point and informative and I am glad you are on the group.

Thank you Didi! I am grateful to be hear with everyone!

viv wrote:What dosage of B12 did you take prior to your becoming ill?

I was taking 1 or 2 drops a day of a methylcobalamin sublingual liquid, which is 40 to 80 micrograms (UG). I do not use any fortified foods.

Scott
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Re: My B12 nightmare (severe neuropathy)

Postby colonyofcells » Mon Jul 20, 2015 10:13 am

I heard b12 absorption problems are more common after age 50 whether vegan or omnivore. Vegans do need a reliable source of b12 and having more than 1 source is probably better just to sure. I heard methylcobalamin is less stable than cyanocobalamin and has to be taken every day. I grew up in asia and I have never heard of b12 deficiency so I don't worry about it.
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Re: My B12 nightmare (severe neuropathy)

Postby Vegankit » Mon Jul 20, 2015 11:12 am

Wow, what an ordeal you've been through - and scary. And what a surprise - B12 was to blame. I'm so glad you are recovering.

Actually I'm not so surprised - even when I was eating a heavy meat SAD diet and taking daily multivitamins that promised 100% B12 - I constantly ran into similar problems as you. B12 was always the last of a very long list of things that they looked at - mainly because I did not present with classic pernicious anemia. While I ate a horrendous diet which would make a paleo meat eater look almost like a vegetarian - I apparently did get enough green leafy vegetables to have a high enough folate that I never developed anemia. Most doctors don't know you can be B12 deficient without having anemia. I've gone through this three times - ending up with injections to bring up my supplies then tapering off injections when the doctor felt I was good........well I still don't absorb B 12 properly which is why this problem kept reoccurring when none of my doctors said to keep taking high doses - rather I was told - your numbers are good now so you can go back to what you were doing..... Well third time was the lucky number - I now take excessive doses - by mouth, haven't had any problems and get tested twice a year to check for any pattern of loss developing. From Cochrane Collaborative and other resources I found peer reviewed research showing absorption of B12 can be just as effective with pills as with injections - just need to adjust the dose and test to be certain you get what you need.

While I had many classic B12 symptoms - the one that surprised me was how it affected the brain causing changes in behavior. The last time I had the worst run away freight train anxiety that would just hit from out of nowhere and crush me - thank goodness it cleared up quickly. I never experienced anything like that - it was just so unlike me.

There are many reasons for poor B12 absorption - and some of us may have multiple pathways with damage. The goal is to get and maintain your B12 levels at a medium to high level and test regularly.

BTW most of my health issues related to B12 went into remission. I still have neuropathy in my hands and legs - but the pain is gone - just left with numbness and weakness which don't interfere with my daily activities- just show up in a neurological exam. I think you caught yours early enough that hopefully all damage can be repaired.
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Re: My B12 nightmare (severe neuropathy)

Postby vgpedlr » Mon Jul 20, 2015 11:33 am

Wow, Scott what a harrowing tale! So sorry you had to go through that, and so glad you found a way out of it. Thanks for sharing so that others may learn.

I don't worry much personally because I am a fairly regular multivitamin user (personal reasons) so I've long gotten a trickle that way. A few years ago I added a high dose sublingual B12 a few times a week, (basically whenever I remember.) This became more important when I realized some doctors, like Hyman and Barnard, recommend everyone supplement with B12, regardless of diet. Barnard's book Power Foods for the Brain convinced me. Then, watching my SAD eating dad test low for B12 and need supplementation finished me off.

I don't see any downsides to supplementation in this case.
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Re: My B12 nightmare (severe neuropathy)

Postby brec » Mon Jul 20, 2015 12:14 pm

Ltldogg wrote:... B12 is a bacteria. ...

The vitamin is a chemical that is produced by bacteria, but is not itself bacteria.
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Re: My B12 nightmare (severe neuropathy)

Postby BlueHeron » Mon Jul 20, 2015 1:22 pm

Thank you for sharing this. I would love to see it reach a wider audience.

I would think a lot of people in similar situations would have just concluded that they didn't do well on a vegan diet. Instead, you tenaciously stuck with it until you figured it out. That's admirable.

I'm so glad you found the answer.
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Re: My B12 nightmare (severe neuropathy)

Postby viv » Mon Jul 20, 2015 2:12 pm

What I don't get is how on earth was your diagnosis missed by the doctors? It's not as if pernicious anemia is a rare disease and from what I've just read online, your symptoms are typical of the disease progressing to serious levels. Seems to me you have a good case for missed diagnosis.
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Re: My B12 nightmare (severe neuropathy)

Postby Ltldogg » Mon Jul 20, 2015 3:14 pm

viv wrote:What I don't get is how on earth was your diagnosis missed by the doctors? It's not as if pernicious anemia is a rare disease and from what I've just read online, your symptoms are typical of the disease progressing to serious levels. Seems to me you have a good case for missed diagnosis.
http://www.nolo.com/legal-encyclopedia/ ... 32288.html


Thanks for the link Viv!

My experience with every doctor and facility was terrible. No one showed any caring for me or the pain. They never followed up and I always had to push for more tests to be done. If there was ever any referrals or transfer of records, the referring/transferring office failed to do it like they said they would, 100% of the time. After a while, I got physical copies and media copies of all notes/labs/film work from every doctor/lab/hospital and took it with me to every new place because I was so tired and disheartened by their failures.

I honestly don't have the energy nor would I want to waste any further on the medical establishment. I will only turn to it in extreme cases going forward after I have exhausted all other avenues and research, minus any accidents (bone breaks, car collisions, etc.).

Sincerely,
Scott
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