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NicoleAJ

Great News! It Was Pernicious Anemia All Along

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A while back I posted about the possibility of having MS, and again I want to thank everyone for their truly encouraging words and support.

When the MRI of the brain came back normal, I thought that meant that I couldn't have MS until a technician told me that there was an abnormality in my visual evoked potential test. I was a wreck until I talked to the doctor this morning. It turns out that there was an abnormality in the waves that my optic nerve was transmitting because I have a lazy eye, but the response time in the nerves was perfect. So it turns out that I do not have MS or neurological pathology, or diabetes, or anything else they can detect. I just have a B12 deficiency, so I need to go to the doctor for shots, and my numbness, fatigue, mouth sores, and other symptoms should go away.

I would, however, love to hear from other people who have this problem, so I know a little bit more about it and what to expect now that I'm on the shots.


Diagnosed July 2004

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Nicole: I am so glad for you that it's not ms. As for the shots I will have to leave that for other's to answer. I just wanted to say I was happy for you!


Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"

"blood work show's a disease called celiac,

but it can't be that because it's rare!"

Diagnosed via blood and biopsy 2003

Not a medical professional just a silly celiac

offering support, my

experience and advice

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Nicole, that really is great news! You must be so relieved! I remember your post from before about MS so I'm happy that it is "just" this.

My grandmother-in-law has gotten the shots for years...it REALLY helps her a ton. In fact, she had gone off them for a few years (just by chance...just got busy and never went back)....started developing a lot of problems. She started getting the shots and it has been really helpful. So, hopefully this will be for you as well.

xoxo

(go psu)

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That is such great news. What a relief this has to be for you.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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I have been doing the B12 shots for about 2 years now. I got tired of going to the dr. every 2 weeks to get a shot so I asked them to teach me how to give them myself. Now I do it once a month, I use a 29 gauge syringe, which is what diabetics use, it is so thin and really doesn't hurt. Fast, and convenient! You might ask your doctor about this option after awhile.


Diagnosed by Enterolab 6/06

Gluten free since 4/06

Autoimmune Thyroiditis since 1997

Pernicious Anemia

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Yeah, it probably would be good to be able to do the shots myself, but I'll just see them do them for the first few times. I'm going back to the doctor in six weeks, so he can see how everything is going.

Melie, do you have to get your levels checked every once in a while, or do you just know how often you need the B12 based on how you feel? Also, where do you get needles? Do you need a prescription for that?


Diagnosed July 2004

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Although I don't have pernicious anemia I was prescribed b12 because it was low. I never did give myself a shot because after the one I had my b12 tested and my regular doctor told me it was normal. The doctor gave me the thin needles and the b12 and told me how to do the "shot".

If Floridian sees this, she'll post as she has her husband give her her "shot". She has pernicious anemia also. If she doesn't see this, please pm her. She'd be glad to talk to you about it.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Nicole, pernicious anemia doesn't mean shots for life. I recomend you go to a health food store and get sublingual b-12. I didn't want to shots for the rest of my life and regular B-12 I could not absorb (gee I wonder why), but the doctors at that time were too stunned to check for Celiac. So, I was told by someone to go get sublingual B-12. All you do is hold it under your tongue and it dissolves and they taste good also. It will go directly into your blood stream.

I am bad about taking pills of any type including those. I do know when my

B-12 level is low my body tells me and then I take them again, the sublinguals not the shots.

I was two points away from being paralyed with the pernicious anemia. I couldn't even remember who I was or my phone number before we discovered it. I could hardly make it up three stairs and I was like this for over a year. One doctor kept telling me all I had was the flu. I even had to sit in the hospital for one day every week for a month to get iron infusions which take over 8 hours each time.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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I should have added that there is the option of sublingual B-12, from what I understand the research supports them as equivalent to the shots. My insurance will pay for the shots, and not an over the counter pill, so I just stuck (sorry!) with the shots. I get my levels checked every 6 mos to a year, they were very high when taking the shots every two weeks, so I am at 1000mcg once a month. My doc writes a prescription for the syringes, they are super cheap, I get them at the local pharmacy. I'm lucky that I am not squeaminsh about shots, it is such a non-issue for me, takes literally 30 seconds and poof, you're done for the month!

Whether shots or pills, the important thing is to get the stuff into your body where it can do its job! :)


Diagnosed by Enterolab 6/06

Gluten free since 4/06

Autoimmune Thyroiditis since 1997

Pernicious Anemia

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Great news!!

I was misdiagnosed with MS, too, and it turned out to be pernicious anemia. I have been getting B12 shots ever since each month and it is a small price to pay, imo. My doctor checks my levels twice a year.

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So glad Nicole--so glad !


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Oh that's excellent news! I have a friend who's sister is struggling with MS and I know how scary that possibility must have been!

eleep


Erica

Inconclusive blood test results

Positive Enterolab results

Positive dietary results

gluten-free since 2/10/06

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Thanks everyone for your support, and thank you Rusla for the heads up on the sublingual B12. I think, like Melie, my insurance pays in full for the B12 shots but not for over-the-counter at all, but it's certainly nice to know that there are options out there. Deej--I'm sorry to hear that you were misdiagnosed with MS before getting the correct diagnosis--it must have been a relief by comparison. I know that it's going to be unpleasant to get frequent shots, but I'd take those over MS any day.

This morning, I woke up after 8 hours of sleep completely rested and rejuvenated--it was wonderful. I hope you have that feeling too Matilda. Also, my foot hasn't gone numb all day. The only problem is that I have a killer headache, but I think it's hormonal--bad time of the month.


Diagnosed July 2004

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A while back I posted about the possibility of having MS, and again I want to thank everyone for their truly encouraging words and support.

When the MRI of the brain came back normal, I thought that meant that I couldn't have MS until a technician told me that there was an abnormality in my visual evoked potential test. I was a wreck until I talked to the doctor this morning. It turns out that there was an abnormality in the waves that my optic nerve was transmitting because I have a lazy eye, but the response time in the nerves was perfect. So it turns out that I do not have MS or neurological pathology, or diabetes, or anything else they can detect. I just have a B12 deficiency, so I need to go to the doctor for shots, and my numbness, fatigue, mouth sores, and other symptoms should go away.

I would, however, love to hear from other people who have this problem, so I know a little bit more about it and what to expect now that I'm on the shots.

(PP) I have pernicious anemia, and took the shots (did them myself instead of going to the doc all the time, they taught me how, and I did it at home) for years, and then took sublingual instead. I would get bad bruises on my thigh, and my husband learned how to do them in my hip, but then those would bruise too, and hurt, so when I found a sublingual that was gluten-free (from GNC, says gluten-free right on the box!) I switched. It is absorbed into the blood stream in the mouth (under the tounge) so no more shots! I just had my levels checked and they are great! (9.0!)

If you don't want to do the shots, ask your doc about the sublinguals....but the shots are not that bad, just if you want another option! I just know that I got sick of the shots...I was on weekly injections so it got old, and you run out of places to do! (can't hit the same spot too often, will build scar tissue).


EnteroLab test positive for gluten intolerence and 2 gluten intolerence and celiac genes

DQ2 and DQ3 sub type DQ7 in December 2005

Gluten-free since Enterolab test, December 2, 2005.

Lame Advertisement Test positive for gluten intolerence in Sept 2005.

THEN found out that my fathers mother had nontropical sprue, she passed away at 40 from (stomach) cancer, had holes in her intestines when they caught it. I had no idea....

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I am a fellow B12er myself. I had neurologic and other symptoms for three years before anyone thought to test it. My symptoms were truly frightening for the last 6-12 months. I can relate to whoever said they couldn't remember their phone number.

The oral B12 is about $8.00 for a three month supply, so if you decide you'd rather not have to deal with the inconvience of the shots, you will know there is an alternative.

Here is some more info on the topic, if you are interested:

Vitamin B12 Deficiency

Good luck!

Cara

P.S. I've never bothered to look into it because the expense is small, but I would like to think if you have a doctor's order for B12 for a medically proven cause, insurance would cover it. It is considered the treatment of choice based on current medical literature, and has to cost the insurance companies a lot less, too. Has anyone looked into insurance covering this expense?

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OH! ALSO! Some meds lower your B12 (like Metformin) so double check your RX's and ask your doc or pharm if you are on anything that will lower your B12.


EnteroLab test positive for gluten intolerence and 2 gluten intolerence and celiac genes

DQ2 and DQ3 sub type DQ7 in December 2005

Gluten-free since Enterolab test, December 2, 2005.

Lame Advertisement Test positive for gluten intolerence in Sept 2005.

THEN found out that my fathers mother had nontropical sprue, she passed away at 40 from (stomach) cancer, had holes in her intestines when they caught it. I had no idea....

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I had no idea that medications could lower B12. Fortunately, I'm not taking any meds except for occasional Maxalt for migraines.

As far as the insurance is concerned, I have graduate student insurance that I pay less than $20 a month for, so they'll pay for anything that you can get at the student health center pharmacy, but their supplies of different types of medicine delivery are limited. It'll be a different story once a get a real job.


Diagnosed July 2004

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I had no idea that medications could lower B12. Fortunately, I'm not taking any meds except for occasional Maxalt for migraines.

If you take that more than once a week, you might want to ask a pharm about it (because I don't have all of my info with me here or I would look it up for you). Just to be safe.....


EnteroLab test positive for gluten intolerence and 2 gluten intolerence and celiac genes

DQ2 and DQ3 sub type DQ7 in December 2005

Gluten-free since Enterolab test, December 2, 2005.

Lame Advertisement Test positive for gluten intolerence in Sept 2005.

THEN found out that my fathers mother had nontropical sprue, she passed away at 40 from (stomach) cancer, had holes in her intestines when they caught it. I had no idea....

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NicoleAJ, I have just been dx with low B12 this year and Dr is still testing to see if I have Pernicous Anaemia. My B12 was 148 when dx. Have had pin and needles in feet for years. And Drs were talking of MS ages ago. With the injections you need a loading dose to start with and then maintainance dose ( or sublinguals). I had 12 jabs in 12 weeks, then onto monthly jabs. Some have jabs every day for weeks - depending on your Dr. The best sublingual lozenges are the methylcobalamin ones - they go straight in better.

Good to hear from others that they work ! Only started them 2 weeks ago and am still not feeling much effect.

A good link if you need info is this one. http://pernicious-anaemia-society.org/ They have a forum as well.


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

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The best sublingual lozenges are the methylcobalamin ones - they go straight in better.

Good to hear from others that they work ! Only started them 2 weeks ago and am still not feeling much effect.

Yes, the research I've been doing also suggests that the sublingual methylcobalamin is best, and equivalent to the shots. Apparently the benefits usually begin the first 24-48 hours. Do be careful and get one which is gluten-free. Also the articles seem to indicate that the ones containing additional vitamins can cause some problems if you overdose, while B12 itself has no known level of toxicity. However, smaller doses are absorbed better, so if you want the best benefits, get a lower concentration, and take it more than once per day. These vitamins are so cheap I can't imagine anyone preferring shots. Incidentally, Source Naturals makes one that is in the methyl form as well as gluten-free. Apparently the liquid ones are even better than lozenges, but I've looked and they don't appear to be so available in quite the right formula - at least not for me. I did find B complex, but I'm sure enough about much of my other vitamin levels that taking it is just asking for an overdose IMHO. I'm sure I'll be posting how the B12 works for me soon, and I am confident it's going to be nearly miraculous.


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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Greetings all

I have been taking the b-12 shots twice a month for 25 years now. A shilling test showed I absorb so little that lozengers will not work. I got REALLY tired of going to the doctors office to do them so learned to do it myself. It is an intermuscular shot so you do not need to worry about finding a vein etc. I usually sit down and give myself a shot in the upper leg...the fleshiest part I can find. Depending on your insurance company you need to get the doc to write a prescription for the needles as well as the b-12. Go figure....they give you an injectible drug but will not give you the needles without it. Its all the things like that it life that keep me laughing at it.

Mysticfrog

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