Possible B12 Deficiency...sound similar?

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Just looking to see if anyone has experienced these same symptoms.  Been chasing my aches pains and podd health phenomenoms for years now and seem to be getting closer.  While I await test results, was wondering if this sounds familiar to anyone here.

My problems could have started a long time ago, with the onset of some early symptoms and just gotten worse.  That is what I suspect as NONE of my symptoms have ever resolved themselves from the first moment that I got them. Just new ones appeared along the way.  Its possioble that my early symptoms were related to some other illness that progressed into b12 deficiency so its hard to say.  But here goes.

Early life I was extremely thin (truly sickly thin)...very late puberty and lactose intolerant with very pale skin.  Started going grey at age 20 and was 50-50 by 30.  Always had night blindness and difficulty adjusting from light to dark and vice versa.

Went through bouts of serious asthma for about 5 years with lots of Migraines, allergies, weird infections etc.

The weird things started about 10 years ago at age 40  when I began to notice edema in both my legs (specifically on the bone in front of my calves).  It would indent and not come back to normal for hours.  Always noticeable and real bad at times.  Drs shrugged it off as eating too much salt.

CK levels started to show up as dangerously elevated along with high cholesterol. (started taking statins).  Dr blamed diet.

Blood pressure started to climb (mostly just the lower number was a concern.)

about 8 years ago, woke up one morning with a dime size glossy spoy on tongue.  Dr confirmed as glossitis and have had it continually ever since.  Constantl changing, always there though.

About 7 years ago,  CK levels start showing elevated.  Not real high but over "normal".  Dr sends me to neurologist to rule out MD. 

5 years ago, I starte getting tiny faciculations/twitches in calves.  Dr sends me to neuro to have EMG done (normal).  

About the same time I start with tinnitus (pretty bad).  Always had trouble hearing in any room with any background noise.  Specialists say I have some hearing loss but that I will get used to the Tinnitus eventually (which I have, but always there and really bad at times).

Vision which was perfect all my sight suddenly goes down the drain.  First close up then distance as well.  Need tons of light to read anything.  Night blindness is far worse now.  Cant hardly read the word shampoo on a shampoo bottle now without glasses.  very blurry. Drs find retina degradation and spotting/greying on my retina...after numerous tests, cannot explain...just monitoring it.

the minor twitches in calves are now MUCH more noticeable and now scattered through my body randomly.  No longer have to see them, I can feel them everywhere from arms, chest, butt, abdomen...just random firings and feel them constantly. Tingling begins in extremities, like vibrations in toes and fingers.

Start getting Raynauds symptoms...fingers are now turning blue in even te slightest exposure to cold.  White to blue to red in a matter of minutes...VERY painful when I come back in for relief....takes about 10 minutes to go away but feel inflamed for hours afterward.

about 3 years ago I start getting crazy fatigue.  Tired just carrying even 3 or 4 lbs for more than a minute.  Shoulders, butt, thighs get tired just walking up steps.  Have to stop and catch breath and relive muscle pai.  Also start to become almost narcoleptic while driving (just glaze over) but especially any time after 5PM.  Complete exhaustion and have to sleep for 1/2 hour or more to come out of it.  Difficulty raising arms over head form more than a few seconds.

Along the way my gassiness and bloating have gotten worse (still thin but have a bloated belly)

Then the mental fog began.  Cant stay with conversations, lose my sense of humour and social skills as I prefer not to talk as much.  Became more short tempered around others.  One bout of what I can only say must have been anxiety/ paranois/depression for about 3 months (that is the only possible "symptom" that actually went away).

started reading about B12 deficiency and celiacs and started wondering if I may have an absorption issue.  being tested currently but awaiting results (endoscope visual indicates H.Pylori bacteria in stomach but awaiting biopsy results).

About 2 weeks ago I decided to start taking a liquid sublingual B-12 supplement (megadose) thinking I may have an absorption issue.   Within a week, the twitches are gone.  (only the tiny ones in the calves are there that have been there for years before it spread).  But all other twitches are completely gone.

Went to Drs yesterday to have b12 measured but I may have screwed things up by trying to treat before tesing (but in my defense, I probably would not have been tested if I had not seen an improvement so sort of a catch 22).

If this is B12 deficiency syndrome then I probably have a long way to go before things get back to normal and if (as I suspect) Ive had this for years, is it possibel that not everytjing will go back to normal.  I do have more energy and less fatigue (but that may have coincided with a recent diet change eliminating alot of fat, sugars and reduced salt and breads)

So anyone here have these types of symptoms with B-12 deficiency?

 

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9 Replies

  • Posted

    Sounds like b12. Maybe a vit d deficiency too.
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    • Posted

      Thanks Heather...looked up some of those Vit D symptoms and there is definitely some overlap for sure.  (though the Vit. D deficiency symptoms ive found seem much more vague).  I'll request that my Dr look there as well.  I truly appreciate the help!
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  • Posted

    Hi marco9marco, this does sound like B12 deficiency. Do you take a general multivitamin, as with low B12 we are low in other vitamins too.? I would also suggest you ask for your thyroid function to be tested. Hope you get some answers soon, and wish you well. Marion
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    • Posted

      Hi Marioin...thanks for the input.   I will request a thyroid test.  I do know my D is low, but not off the charts low.  If this first B12 test comes back a a problem, I am certain my drs will order a slew of "absorption issue" type tests...but I will certainly encourage her to look for other problems as well because realistically, there is nothing missing in my diet.  (yes, I do take a basic multi vitamin along with Fish oil, extra D and calcium supplements daily.  Only medication i take is hydrochlorothiazide (water pill) to help keep the leg edema in check which also has bonus of keeping blood pressure lower (or so I am told).  Thanks
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  • Posted

    Hi, read a book called Could it be B12? On Kindle too. Also, have a look at www.pernicious-anaemia-society.org.uk

    They have a good forum with members who can interpret blood test results for you. Always get a print out of all results. Read about Active B12 testing/ methylmalonic acid (MMA) and homocysteine. St Thomas hospital does it. Find out all you can as Drs don't seem to be that up to date. Stop supplementing (if u can bear to) as it will affect testing.

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    • Posted

      Thanks Blue D....I will mention those other two tests to my dr.  Yeah, the supplementing was probably a mistake, but from what I understand (only started 10 days ago) it takes a while to raise b12 to healthy levels quickly anyhow (my hope is this test taken 2 days ago doesnt come back skewed.)  If it comes back normal, I may stop taking it and retest down the road.  i do believe that it is helping though.  And I have to be honest, muscle twitching, while not painful, is kind of a scary thing while you are experiencing it.  And knowing that its neurological makes me wonder if its doing permanent damage elsewhere (specifically the brain and spinal column).  Some people say that there are some aspects of PA that reverse themselves and some that dont (specifically the neuro aspects) and not sure how much I want to risk that possibility more than I absolutely need to.  Thanks!

       

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  • Posted

    I'm happy for you that b12 helps at least one major symptom! The lack of it can certainly cause most or all of what you've described (some of it, like glossitis, I've not heard of before). As someone who was deficient in B12 (and D, currently getting B12 injections) and now also going for full Coeliac testing, I can relate to the issues involving the gut, the muscle/extremity issues, the Raynaud's and the premature gray! Completely with you in brain fog and fatigue, too!

    But, you have a wide array of so many issues, there could be more to it. As marion mentioned, maybe thyroid or another "system" is out of balance, too.  It sounds like your Celiac tests are done, just waiting for results and you're on a low FODMAP diet, which helps some people with and without CD. You might want to try one thing at a time moving forward and keep notes, like a food diary (and medications/vitamins, etc.) to hep you figure out what is allievating which conditions.  

    I'm not sure what specialists you've seen, but if you haven't tried a rheumatologist, that may be a good next step?  It was a pediatric rheumatologist who found my son's CD after a long time of fatigue, pain (joints, stomach and head), grumpiness (he was five) and eczema (afraid we still have that, it's NOT gluten related). I was afraid he had arthritis or...something...systemic.  It seems like you may, too - or more than one condition.  GOOD LUCK!!

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  • Posted

    hi,

    i just want to share also and maybe i can get some advices from these forum..my symptoms started a year ago..i felt some twitches on my both lower abdomen that i thought i have infections so i went to dr and had check my urine,yeah i had very low infection, dr gave me antibiotic for a week and i did have water therapy even i was drinking cranberry juice to help the antibiotics..but a week after,i can still feel the twitches so,i decided to have ultrasound and they found i have polycystic, then i asked for 2nd ultrasound with the ob gyne but she didnt find any polycystic disease..so, i was confused already..few days later, my back started to ache that i cant bear to stand for long.i went to bone doctor and he too xray he said only muscle strains,asked me to physiotherapy..i did but it didnt help..after that i decided to go for a specialist bone doctor.same thing only muscle strain, again physiotherapy..i was referred to the public hosp here in qatar where there is affordable tratment even free in some laboratories and medicines but i have to wait for appointments..i was coming back and forth to the hosp everytime my back aches they just gave me pain reliever and celebrex and yeah sometimes it works..following weeks,i always feel tired,depressed..feeling nauseated cannot eat more than i can though i wanted to eat more..muscle twitches appears everywhere butt,legs,arm,on my back..my toes and fingers are shaking..i can even feel vibrations on my legs and in my arms especially when im lying on bed..i got poor eyesight,now i have eyeglasses..i can feel the beat of the or its like palpitations or its like pulses on my back..i always have migraine attacks accompanied with nausea and vomiting..dr requested vit d levels check..and ask for mri in my neck area since this is where i usually feel the pain that radiates to my shoulder..and i my tongue is like sore, and i have theres is small like pimple at the back of my mouth that comes and go for only a day then come back in no time..my nails also becomes brittle..im still waiting for my next appointment together with the results..i would ask maybe for b12 level to be checked..i dont know anymore what to do..its been a year since i got all these symptoms..i hope u can give me advices to what should i do next..

    thank u!!

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