Tia with pa : Hi friends I was curious... - Pernicious Anaemi...

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Tia with pa

Bloominflower profile image
11 Replies

Hi friends

I was curious if anyone else has had experience of white spots on mri scan showing hyperintensisities with diagnosed PA. They think it’s TIA’s but I’m without other risk factors. I read that low b12 can increase risk of cardiovascular troubles amongst the long list.

My doctor is kind but clueless and is worried about the high levels of b12 after injecting and wants to take me off weekly injections. So this also leads me to needing to purchase my own b12 injections I’m in the states so a link to where you buy would be very much appreciated.

Thank you wish y’all a happy weekend!

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Bloominflower
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11 Replies
wedgewood profile image
wedgewood

Sorry that I can’t answer you on the TIA question , but here is some information about getting B12 injections .

Supplies for injecting B12 in USA .( Canadian online pharmacies ) Cynocobalamin B12 .

biosenseclinic.com Has Cynocobalamin in single use ampoules ( safest method) and multi-use vials .Also have needles

canadadrugsuperstore.com

Has same as above .

b12vitaminstore.com Has single use ampoules and multi use vials of Cynocobalamin ( seems to operate out of Thailand )

_____________________________________________________

bulksyringes.com has needles and syringes

allegromedical.com ditto. ditto

shopmedvet.com ditto. ditto

It is safer to use single-use ampoules than multi-use vials in a domestic situation , because of the danger of contamination, and the fact that a vial is not used up quickly, unlike an ampoule which is injected within a minute of being opened .

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Looks as if mycare.de. will deliver to USA

Do register ,by clicking on the silhouette at the top . When entering your address , enter your country first using the drop-down list The USA is referred to as “ VERIENIGTE STAATEN von AMERIKA . Then the computer will accept the rest of your address .

You can obtain Panpharma B12 depot ( Hydroxocobalamin) single use ampoules 1mg. X1ml

And Hevert 1mg x 2ml “. “. “ “

I don’t know shipping costs .

Methylcobalamin can be obtained from a USA source in Boca Raton

vitaminquick.com

vitaminb12online.com

Supply all the cobalamins from Australia ( Closing down on April 10th 2022)

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B12 can be administered by either an Intra-Muscular or a sub-cutaneous injection .

For an I.M. Injection a 25G x 1 inch needle can be used .

For a sub-cutaneous injection a 30G x 1/2 inch needle can be used .

A long coarse needle , say 21G x 11/2 inches long, can be used to withdraw the B12 from the ampoule. This is needed because the needle is made blunt by touching the ampoule . This would make the injection painful .

This information is supplied to you by a private individual , who has been self-injecting for six years, using single -use ampoules.

Forgot to mention that you should also obtain a sharps disposal box ( it’s usually yellow here in U.K. ) . Best wishes .

Bloominflower profile image
Bloominflower in reply to wedgewood

Really appreciate your help-just ordered! All the best to you!

Sleepybunny profile image
Sleepybunny

Hi,

If you search online for "White matter brain lesions B12 deficiency" that should show some links to research articles about effects of B12 deficiency on brain.

I have read articles that suggest high levels of homocysteine can be associated with an increased risk of stroke.

High levels of homocysteine can be associated with B12 deficiency.

"My doctor is kind but clueless and is worried about the high levels of b12 after injecting"

Misconceptions (wrong ideas) about B12 deficiency

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website)

stichtingb12tekort.nl/engli...

UK blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands)

b12-institute.nl/en/diagnos...

Other B12 links

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members not in UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

I think latest PAS newsletter mentioned a new PAS support group in Chicago.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Two useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films and videos about B12 deficiency and PA

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

Wall Street Journal article on B12 deficiency

wsj.com/articles/vitamin-b-...

I am not medically trained.

Bloominflower profile image
Bloominflower

Thank you sleepy bunny! Some wonderful insightful articles to further educate myself! Many thanks and all the best!

Nackapan profile image
Nackapan

Yes I had white lesions s sad scattered? T2 flares. Everyone I was told have some irregularities.

J had s repeat brain snd upper cervical MRI a yesr later.

Comments were.

Nothing sinister found

Bloominflower profile image
Bloominflower in reply to Nackapan

I’m glad it was ok after follow up tests! Wish you the best!

etreas profile image
etreas

Hi Bloominfower,

I'm a neuroscientist who uses MRI to study brain abnormalities associated with aging and dementia, so I hope I can help with your question. I assume your MRI scan was a T2 FLAIR, is that correct? White matter hyperintensities (WMHs) on FLAIR scans reflect damage to the brain's "connections" (made of axons), but these lesions are actually quite common. They correlate strongly with age and with hypertension, so if you are in your later years or have high blood pressure, this might explain your WMHs. Other risk factors include diabetes, high cholesterol, smoking, and heart disease. Do you have any of these? Typically, these WMHs reflect damage to the vasculature (blood vessels) in the brain's white matter.

Although a less common cause, B12 deficiency also correlates with WM lesions. One theory is that these lesions are due to damage to the myelin (which surrounds the axons), in contrast to vascular damage caused by hypertension, diabetes, etc.

In sum, there are many potential reasons for your WM lesions and I hope your doctor follows up to pinpoint the cause. If your doctor suspects a TIA please don't ignore this, as it could be an important warning sign.

Best wishes!

Bloominflower profile image
Bloominflower in reply to etreas

Hi etreas

Appreciate you taking the time to comment. Interesting thoughts, yes exactly T2 non specific hyperintensities, I’m only 40 and otherwise healthy no predisposing conditions.

I read that mma and homocysteine levels that are high ( I have never been tested for this) can also bring up cardiovascular issues or TIA and I’m thinking maybe I needed to inject more frequently . I will follow up on this, thank you for highlighting importance.

Wish you all the best!

Litatamon profile image
Litatamon

Yes.

And as etreas noted I was told they were not uncommon for my age - 50s

But I had no other issue at hand than b12 and was quite active.

And when I looked up the location of them they were in the area responsible for gait

Waking/gait issues - and falling - were one of my earliest signs of B12 deficiency and the easiest to note a serious issue at hand - as I used to run down subway steps and walk for hours. So the change was quite apparent

And I still to this day have to chant left right left right in my head to walk. It is one symptom that has been quite frustrating.

scnuke profile image
scnuke

I can vouch for biosenseclinic.com. I have been purchasing the 30 ml vials for several years now. I buy injection supplies from Amazon. 3cc syringe with 22g 1.5" needle for withdrawal and 25g 1" needles for IM injection. I also have an Rx for hydroxo that I also use. Your MRI sounds very likely normal for age. I am retired board certified in Nuclear Medicine/Ultrasound/MRI/CT and saw this frequently. I have them in my scan. Age, diabetes, HBP, heart disease can all contribute. Keep doing what you need to do in spite of doctors that really don't know much about what you need.

carr_trip profile image
carr_trip

I had white matter hyperintensities (discovered after TIAs caused by a PFO) -- never sure if they were caused by TIAs or myelin damage from lack of B12. I was 36 when that discovered -- I self-inject B12 subcutaneously from a vial (not ampoules) -- ...would like to use ampoules, but find it easiest to just order from CVS and get what I can that my insurance will cover. I use hydroxocobalamin rather than cyanocobalamin. The injections help a lot with the fatigue and brain fog.

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