Hello All

[Enjay222]

I was told on Friday that my B12 is very low and I'll be starting shots. After several months of medical problems: numbness in hands & feet, balance problems, extreme fatigue, weakness (more on left side than right) and walking like a weeble, except I do fall down, here I am, trying to learn more about what has happened to ME. In less than a year, I have gone from being a fairly active person who loves to fish and garden to someone who can't even walk to the garden much less bend over. I've had several falls, last one (in June) tore ligaments, tendons and broke an ankle bone. Thought I could have thrown back out to account for the walking and possible pinched nerve for the numbness. Through testing have ruled out stroke, MS, Rheumatoid Arthritis, and few other possibilities. The symptoms listed on this site are the closest I've seen to my own. It's also let me know some important questions to ask my neurologist. Thank you

[clivealive Forum Support]

Hello Enjay222 are you in the U.K?

It's good to know that you have at last got a diagnosis of low B12 which may be the cause of your neurological symptoms.

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Do you "see yourself among the above"people"?

You don't say when (or how many) "shots" you are going to have.

Is it possible to get your Folate level checked as this and B12 helps your iron to function properly and to make red blood cells? There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

I am not a medically trained person but have had P.A (a form of B12 deficiency) for 46 years.

I wish you well.

[Enjay222 in reply to clivealive]

Thank you for reply, I'm in the USA (Montana). As of yet, do not know test numbers however will get them on the 17th and find out shot information. Am over 60, suffered from infertility, 30 years non-drinker and total meat eater.

In May was diagnosed with Asymptomatic Microscopic Hematuria which may or may not have anything to do with Low B12.

Due to psoriasis I've been on Methotrexate (immune system suppressant) for quite a while which does affect the liver, quit last December because of an infection (cyst).

In June I started Otezla for psoriasis which had awful side effects and quit taking it in late Sept. Hint: any drug that comes with a package of Anti-diarrheal should not be legal. Even after 90 days, it didn't work at all on my psoriasis. Also, please tell me you are not laughing at a 60+ year old woman trying to make her way to a loo as quickly as possible using a cane and wearing a knee-high velcro boot because prescribed medication causes "explosive diarrhea".

So, it has been a busy year with the Urinary testing (late April & early May), Minor Surgery (deep tissue cyst removal in May), new medication (June) in addition to injury (also June) where I was in "the boot" until late August.

Since then, it's been why aren't I doing any better? Wake up every couple hours with hand & feet tingles or numbness and sometimes muscle spasms. Can't walk without dropping left foot, concentration is shot, can barely type and have the dropsies of almost anything I pick up. Dishes, silverware, lit cigarette.... and I couldn't pass a drunk driving test if my life depended on it.

And here I am - finding out it isn't MS, Parkinson's, or mini-strokes. Hoping there is not permanent neurological damage...

Question, Hemotologist or Neurologist be better for this course of treatment? Or both working together.

[clivealive Forum Support in reply to Enjay222]

Wow! You are "going through the mill".

I don't know the protocol in the USA for B12 deficiency but here in the UK we have alternate day injections until there is no further improvement and then "maintenance shots" every two or three months.

I think you will be given cyanocobamalin B12 with maintenance shots every four weeks.

Don't forget the Folate check.

Now you have a diagnosis your clinic/practice nurse will be able to give you the injections.

[taka Administrator in reply to Enjay222]

Sorry to hear you've been going through so much.

You need to be started on B12 as soon as possible. Have they started you on them yet? There seems to be no standard guidelines for treatment in the USA but you will probably be on an intensive course of injections (given your neurological symptoms) for the next while then eventually monthly injections.

Methotrexate disrupts the actions of folate so if you were prescribed high dose folic acid when you were on this medication it may have masked the macrocytic anaemia often (but not always) seen with a B12 deficiency.

Also did your minor surgery or other procedures involve any nitrous oxide (also sometimes called laughing gas or gas and air)? This inactivates B12 in the body. Most people are fine after this as they can absorb B12 fine so they can replace it ok. However if you have an absorbence problem or pernicious anaemia you can't easily replace it and deficiency related symptoms and problems can follow.

Whether a neurologist or a haematologist would be better? I don't know. I think seeing a neurologist would be a very good idea as you have various neurological symptoms that may or may not be B12 related and need to be looked into and tests carried out to find out what is going on. An MRI of your spine may be a good idea too. Is the doctor who asked for your B12 to be checked your neurologist and will they be in charge of your B12 injections or would this need to be a haematologist? Sorry I'm not sure how the healthcare system works in the US! B12 deficiency doesn't neatly fit into one speciality or other sadly and many doctors don't know much about it.

You should also be tested for pernicious anaemia (PA) too by testing for anti-intrinsic factor antibodies if they haven't already done so. The test is sadly far from perfect as 40-60% or people with PA test negative. People with an autoimmune condition seem to be at a slightly higher chance of developing other autoimmune conditions too. PA is where the body attacks the cells producing intrinsic factor (and develops antibodies against intrinsic factor itself). Without intrinsic factor only a tiny (~1%) of dietary B12 can be absorbed by the body and eventually when the body's stores are depleted B12 deficiency and it's myriad of symptoms ensue.

I'd also say definitely get your folate levels checked too as has already been mentioned.

[Enjay222 in reply to taka]

Will ask if test included folate level on Tuesday's (the 17th) appointment. Since I've been on methotrexate for extended period, it was suggested to take folic acid supplement, however went off the metho late December 2016.

Will post more after the 17th - believe will get 1st up-load shot then.

[Sleepybunny]

Hi,

I am not medically trained, just someone who has struggled to get a diagnosis.

"some important questions to ask my neurologist"

I found the following books useful. The third is written by USA authors.

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

I saw numerous neurologists and only one seemed to have reasonable understanding of B12 deficiency so I'd suggest reading lots of B12 info.

None of the neuros I saw asked me to do any neurological tests with my eyes closed.

People with B12 deficiency can have problems with proprioception. They can lose awareness of their body in space. I would suggest asking neurologist to check proprioception. One test neuros sometimes do to test proprioception is called Romberg test, another one is walking heel to toe with eyes closed.

These tests should only be done under supervision of a trained doctor.

Have you had tests for PA (Pernicious Anaemia)?

Sally Pacholok and JJ. Stuart have a B12 website called "B12 Awareness".

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS are based in Wales, UK but have members from around world including USA. PAS members can access details of PAS support groups. There is one PAS support group in USA, in St Louis, Missouri.

pernicious-anaemia-society....

PAS news item about neurological consequences of PA

pernicious-anaemia-society....

There may be stories of interest on Martyn Hooper's blog about PA and B12 issues

martynhooper.com/

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

[Enjay222 in reply to Sleepybunny]

Sorry for the delay in replying Sleepybunny. I did pick up the Could it be B12? and What You Need to Know... You might say I am cramming for my next appointment on Tuesday (the 17th). Notebook with list of questions (including actual level of B12 and plan of treatment over the next couple months since I like to be prepared)

My neurologist did have me close my eyes & touch my nose - did pretty good with right ... missed with left. Mentioned in previous post that I couldn't pass a DUI test - heel to toe walking much less with eyes closed (or in a straight line) anymore. Actually, other than very short trips - I haven't driven in over two months. I don't trust that I won't have a muscle spasm while driving.

I (hopefully) will find out more info on Tuesday and post what I found out about load-up period, additional tests that might be required, side effects and chances of relief from symptoms. How soon can I potentially see improvement? Things like that.

Meantime, am trying to keep sense of humor since they've ruled out the really bad diseases like MS, Parkinson's, Mini-strokes and just plain senility.

[Sleepybunny in reply to Enjay222]

Good luck for Tuesday. Hope GP/neuro can answer all your questions.