pernicious anemia update(chemar; mrsD; anyone?)
 

Hello! and another thank you to all who have helped me in the past. :grouphug: I've been 'away' but have some good news to share and, of course, a few questions please. I seem to be very good at asking unanswerable issues, but if I can't try here, where can I go??

(1) Personal update: I saw my MS neurologist yesterday and he declared me essentially 'cured' (I suppose he meant better than I was or as good as I'll get.). :Head-Spin:BREIF RECAP: When I first saw him 1/22/09 it was to verify MS due to dark spots on brain - which he dismissed, also extensive paresthesia & numbness. As a parting thought he suggested we check my b12 - which was an astonishing 68! (Also, I was finally diagnosed w/pernicious anemia. tested positive for IF antibodies.)

Since then I have been taking a very modest regime of supps (when I read what others are taking) : NO SHOTS; 2000 jarrow methy-b12 daily, ad-b12 1/day, b-right 1/day; solgar folate 800mcg/1per day; RxOmega-3 factors and multiple vit/min supplement; E & C. Follow-up blood work was B12 1040 and 810. I'm due for another test Tuesday.

My balance has improved; the fingers are better- could not type or write when I first saw him; legs are more 'predictable' - don't stumble as often. I actually can run up our stairs to second floor - sometimes. Feet are not constantly buzzing,burning or freezing -- but still have that weird 'second toe' problem w/numbness. Mid-thigh to mid-calf, esp. knees, feel like they have tight rubber on them - doesn't seem to interfere with ability to walk most of the time, just feels strange. L'hermitte's seems to be FINALLY diminishing. YIPPEE. Reflexes are back. And my tongue which caused extreme pain & swelling for 10 years is completely normal. (note: unfortunately my hair is still very white, very prematurely:p )

So he was very very happy with my progress; said to continue what I'm doing and come back in six months. :Excited: My embarrassing question :Is this improvement possible so quickly and without the super mega doses of sub b12 (i.e. 10,000+/day)?? :Scratch-Head:

My attitude/mood is about 100% better. (brain fog still very thick - brain damage is probably not repairable: brain atrophy) My sister & husband say I'm like a new & improved person.... So this is all GOOD, FABULOUS. :yahoo:I know this seems weird & paranoid, and it is, but when I read about the struggles of others for years without improvement, it makes me wonder if this is some kind of a crazy false start. Well, WHATEVER it is, I am sooooo grateful.:heartthrob:

(2) I have read several references to stock-piling supplements (WD.com), i.e., m-B12, due to 'something' happening later this year. SCAREY!!! What does this mean? anyone have any idea?? (some of these were posts from other countries)

(3) Also, someone asked if you could experience fatigue without anemia. My personal answer is a resounding YES YES YES... for me the fatigue/exhaustion is the one thing not much improved. Extensive blood work just does not show any signs of anemia.... just the inability to process b12 in my stomach. So WHY am I tried most the time. :Zzzz:(I don't expect an answer, of course...) I suppose being a couch potato for many years does not help. Nor does being unable to work for five years. I read that exercise cannot actually help nerves repair but stronger muscles are of course helpful in walking, etc..

If I am asking things already answered or addressed or just plain nonsense, please forgive me. Reading has always been difficult due to extreme dyslexia, AADD, plus, and I really have trouble making sense of much of what is said here.... but I do feel your concern through the confusion.

Any thoughts or comments regarding above would be, as always, very much appreciated! I honestly believe my life was saved ! Nancy:hug:

PS I sure do enjoy all these smilies... (no kidding! hehe...)

PPS Someone please write - anything - it's so embarrassing when you pour your heart out and open yourself publicly - and no one comments. My low self esteem won't handle it well. What a fruitcake I am. Ahhh, life's a real trip, isn't it???

I am so glad you are feeling better.

Some people's hair changes with folate supplements. But at 68 I think you are stuck with what you have now. I think you look elegant, myself! ;)

I am not sure what will happen in the Fall. This worry has been going on so long, it just never results in the dire predictions.

Oral B12 is approved by doctors here, I don't think it will disappear in any event.

Hi pearlgirl
I have tested positive for anti parietal cells and have been told I have auto immune gastritis. Last Dec. I got my level up to 1419 by taking up to 3 5000mcg (jarrow methly b12) a day. I cut back to maybe 3 to 5 a week. In the begining of may my level dropped to 502. I am also taking other supplements. Lots of things improved for me but the one thing that is constant is the fatigue and weak muscles. My GI doctor thinks I should cut back to 1000mcgs a day, I don't think I will. I think Iam better off at 5000 a day at least.

I have been dealing with this issue for over 2 years now and Iam still unable to find a doctor who really knows about b12. I also had an mri done that showed multiple leasions. A neg. lumbar puncture convinced the neuro. that it is not MS, but I never got an answer as to what those leasions are from.
I just recently had a blood test to check hormone levels and my cortisol came back high. THe doctor wants to check for cushings (I know I do not have that). He told me to reduse the stress in my life! Well since my husband would frown upon getting rid of my kids, I guess I have to deal with my stress!! LOL who dosn't have stress??

I am going to continue with what Iam doing. I think at first you feel great then there are set backs and then you start feeling good again.

Good luck

This is AWESOME!
I recall some time ago, my doc asked me to take a B50 tablet and extra B12. I really felt the difference! Since then, I take my vitamins seriously!
Sounds like you do too!
Life is GOOD! Enjoy!

Well, I wrote a big long response the other day... and then timed out and lost it. I didn't have the energy to rewrite it then, but today is a new day!

In any case...I'm so happy to hear of another B12 success story!!!!

Yes! My B12 level was not as low as yours, but I had many of the same symptoms....started out as nuisance type symptoms, but were beginning to cross over to serious and frightful symptoms.
http://jccglutenfree.googlepages.com...ciencysymptoms

I brought my level up nicely on 1000mcg cyanocobalamin daily, with many of my symptoms improving within three weeks. I was low normal of 294 at dx, 650 after two months, and up near 1000 at six months. I switched to methylcobalamin as soon as I learned of it, sometime later in the first year. I take 1000-2000mcg daily ever since.

I did notice that early on when I took 2000mcg some of my symptoms (mostly the buzzing and twitching) would pick up... but later learned this can be a sign of nerves healing. Whether demylenating or regenerating it can cause some of the same symptoms. So... I actually looked forward to those sensations.

Some of my symptoms improved within as little as three weeks, many of my symptoms were completely gone by six months, and some of my symptoms continued to improve past the one and two year marks... even longer when it comes to the cognitive problems. My twitching and buzzing continued past the year mark, but had so greatly diminished by the six month mark that it wasn't that bothersome. I haven't felt a hint of that in many years now.

It has been nine years for me, and still if someone massages along my spine... I get weird sensations.. but this finally is almost imperceptible. What symptoms are left... my memory, word finding/recall, concentration are not 100% of where I was previously. But, I've improved enough so that it doesn't get in my way too often anymore. My vision still sucks. I was always very nearsighted to begin with, and had my fair share of floaters... but when I was B12 deficient I had a huge increase in floaters, not just squigglys but blurry blob spots, too. I had dimness of vision, and a gray spot at 7 o'clock. Also had numbness, stabbing pain, dryness and grittiness. In any case, the numbness, pain, dryness and grittiness all resolved by the 6 month mark... but I still live with tons of floaters that make it a nuisance to even read.

As for fatigue, I didn't notice fatigue as a major symptom until after I began supplementing with B12. Of course, having been hypothroid for many years, I feel like I've always had more fatigue than the average joe. But, when I began supplementing w/ b12... it was "hit by a truck" fatigue for several months. I spent a lot of time sleeping and was very tired all the time. Rose, who taught me all I know about B12, said this is not uncommon because it is a lot of hard work for the body to repair. There was a supplement she recommended at the time that might help with that early fatigue, but I can't remember what! Sorry.

I had been very weak when B12 deficient. It was to the point that I couldn't lift a pan filled with water, or hold the hairdryer up to dry my hair. My strength gradually increased over time... and it still amazes me that I am stronger at age 50 than I ever was at 30-40. I can even shovel snow now. I did at some point hit the gym and do some weight training, but that wasn't until much later. I probably should have done it sooner... but not too soon! Listen to your body ;).

My sister read this book... The Brain that Changes Itself ...that suggests brain damage is repairable, or at least retrainable.
http://www.amazon.com/Brain-That-Cha...ref=pd_sim_b_1

If you check out the other books that come up with it, you will find several others on the same subject. In any case, the idea is that brain cells can regenerate, and you can also retrain/compensate within other areas of the brain.

I haven't read the book, but hearing her talk about it inspired me to start working on my brain. Brain exercise. I wish I wouldn't have waited nine years to start! I'm just doing little silly things.. like I bought myself a Nintendo DS and play Brain Age, and other math and vocabulary games. Playing the Brain Age games made a big difference in quicker thinking. If I had to pick my worst cognitive symptoms that remian, I would say they are recall and sluggish thinking... and playing the games seems to help. My memory has improved... at worst I couldn't remember three items on a list between home and the grocery store. I'd get there and stand dumbfounded, not being able to remember a single item of three. Recently, I forgot my list for a major trip, and managed to remember something like 47 out of 48 items. I remember celebrating the first time I could add two double digit numbers in my head again... still a challenge.. but I could do it.

I sometimes do my daughter's algebra homework with her~ we work the same problems at the same time, just to use my brain. And, I'm trying to force myself to read more (despite my bad floaters). Word games, crossword puzzles, memory games... anything you can do to challenge your brain is not going to hurt you... and may help you regain.

And there are other nutrients important to brain health, but it looks like you have that covered.

In any case, I feel your joy! I remember the relief that came with improving. Time will tell how complete your recovery will be, but know that even though they say most improvement comes within the six or twelve month time frame... and it did for me... I continued to improve for many years more.

Cara

It wouldn't hurt for you to be tested for gluten sensitivity/celiac disease if you haven't been. It can co-exist in someone with pernicious anemia, and can also cause brain lesions similar to those caused by B12 deficiency, or MS.

Polyglandular Autoimmune Syndrome, Type III
http://emedicine.medscape.com/article/124398-overview


Gluten sensitivity can also cause other neurological symptoms similar to B12 deficiency or MS, including cognitive decline. It can occur in tandem, and if so, would prevent full recovery unless also dx'd and treated.
http://www.medicalnewstoday.com/articles/53741.php

Brain fog is a common complaint in those with gluten sensitivity, but of course, brain fog is common in so many conditions. I've had two waves... first before my hypothyrdism dx and then ten years later before my B12 deficiency dx. Still have it a bit... but not pea soup like it used to be. Be sure to keep your eye out for thyroid disease in the future... assuming you've been tested for it?



Diagnostic testing for celiac disease/ gluten sensitivity
http://jccglutenfree.googlepages.com/diagnostictesting

You might also find some info in these links of interest.
http://jccglutenfree.googlepages.com/multiplesclerosis
http://jccglutenfree.googlepages.com/b12deficiency

THANKS for your message!!
 

Hi Cara,
I just awoke from my usual nap and found your messages. Wow, gal, you are terrific. I appreciate all the info and encouragement. You helped to be more positive about the possibility of future healing. And I especially appreciate that you cared enough to write out your thoughts two times, after losing the first message. Not many would be so tenacious.

I am due to get the results from my fourth B12 test results today or tomorrow. I am extremely curious to find out the level !!! It will help me to proceed with my supplement doses as I have been experimenting during this 3 month period with higher levels.

You stated, "It wouldn't hurt for you to be tested for gluten sensitivity/celiac disease if you haven't been. It can co-exist in someone with pernicious anemia, and can also cause brain lesions similar to those caused by B12 deficiency, or MS." OK, here comes the dumb question. Firstly my favorite meal/snack is triscut crackers with cheddar cheese. I eat wheat cereal; wheat bread, etc., drink lactose skim milk 2 or 3x per day. Is it even remotely possible that I could be on this type of diet and still have a gluten sensitivity. Since taking the supplements, my intestinal tract and :eek: evacuation/bowels :eek: has never been better, and I have no diarrhea which I did occasionally have pre-treatment. What do you think ??

Anyway, I am reading the links you listed and re-reading your message. I am so grateful. You are indeed a nice person, and I would like to list you as a friend, ok? Heartfelt regards, Nancy :hug:

B12 deficiency can cause GI symptoms, and I did have improvement in that area just by fixing the B12 deficiency, and I was also taking fish oil to help restore the gut lining.

I went gluten free a year later, mostly to support my daughter. I had further improvement... to the point I have zero GI complaints... here's the story if you care to read it.. http://jccglutenfree.googlepages.com/thestory

Further, I've found I have casein sensitivity... and actually react to casein with joint pain... arthritis like symptoms in my fingers, toes, and lower back. It took me a few years to actually connect that the few times I'd eat dairy... it would follow with those symptoms.

Could you be gluten sensitive or have celiac disease without having any GI symptoms? Short answer is yes.

Many people are completely asymptomatic, at least asymptomatic of "typical GI symptoms". They have even named it "silent celiac disease". Sometimes people have symptoms or conditions and don't necessarily realize they could be a symptom of gluten sensitivy... like odd rashes, psoriasis, osteoporosis, infertility, seizures, peripheral neuropathy, frequent canker sores, migraine headaches, and on and on and on. There can be wide ranging symptoms or no symptoms at all... although eventually something may show up... often the result of long term nutritional deficiencies. If you scan the right bar of The Gluten File, it lists the various conditions associated with gluten.

So... it might be a long shot, but the screening is just a blood test... easy to do.

Gotta run... late to pick up my daughter!