Re: Noah Update... LONG overdue :)

[Guest guest]

Hi,

I have been B-12 Deficient for about a year and a half now. I only

have PSC, at least at this time. SO far I do not have an offical

Diagnosis of UC and have no symptoms of it, though they are talking

about regular colitis. B-12 is stored in the Liver and when the liver

is damaged it can no longer store it, at least that's what they told

me. Below is an article from the Mayo clinic on B-12 Deficency and the

link to the article. My levels did not go up with oral b-12

suppliments and I was very symtpomatic, dropped 60 pounds, no energy,

memory problems, tingling in my fingures. I began weekly shots and

within a few weeks I started to feel better after 3 months my shots

decreased to monthly and I regained some of the weight I lost. Now I

get monthly shots and am doing fine. I don't know if tat helps, but

that was my experience with it. If you have any other questions I

will try to answer them.

Dawn

Vitamin B12 deficiency

Studies have shown that a deficiency of vitamin B12 can lead to

abnormal neurologic and psychiatric symptoms. These symptoms may

include: ataxia (shaky movements and unsteady gait), muscle weakness,

spasticity, incontinence, hypotension (low blood pressure), vision

problems, dementia, psychoses, and mood disturbances. Researchers

report that these symptoms may occur when vitamin B12 levels are just

slightly lower than normal and are considerably above the levels

normally associated with anemia. People at risk for vitamin B12

deficiency include strict vegetarians, elderly people, and people with

increased vitamin B12 requirements associated with pregnancy,

thyrotoxicosis, hemolytic anemia, hemorrhage, malignancy, liver or

kidney disease. Administering vitamin B12 orally, intramuscularly, or

intranasally is effective for preventing and treating dietary vitamin

B12 deficiency.

http://www.mayoclinic.com/health/vitamin-B12/NS_patient-vitaminb12

> What you would expect from a fibrotic liver.

> Dr. K's nurse did call and his Vitamin B12 was low... so we are

given

> 1 month to supplement orally and then we will be giving him

> injections if that does not come up. Anyone have experience with

that?

>

> I bet that is more UC related? Although I bet liver kiddos don't

>

>

[Guest guest]

his Vitamin B12 was low... so we are given 1 month to supplement orally and then we will be giving him injections if that does not come up. Anyone have experience with that?>>>

I have experienced low B-12 back in the dark ages when I was a teenager with UC. No PSC at the time - that came about 20 years later. My dad gave me the injections at least weekly. Besides hurting my dignity (the shots were in my rear end and being a teen aged girl it was a little embarrassing) they didn't hurt and did seem to help my energy level. It's been so long that I can't remember the frequency. We were never able to successfully control the UC but as soon as I had a total proctocolectomy with ileostomy my B-12 stayed normal. I agree with you in that it is probably his UC causing the shortage. HTH a little.

Blessings,

Barby - KS

UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07married 29 years , 5 sons, 2 daughters in law, 1 granddaughter, 1 grandson , granddaughter due 3/09 and 1 golden retriever

[Guest guest]

Wow Lori,

How strange both our boys are having the same issues at the same time.

Can't wait to hear from you... we can share stories.

Sleep study huh?! Rewind... gosh how long ago ... 1 year for us... what fun!

Enjoy! HE HE!

www.caringbridge.org/visit/noahwmartens

Love,

[Guest guest]

Wow Lori,

How strange both our boys are having the same issues at the same time.

Can't wait to hear from you... we can share stories.

Sleep study huh?! Rewind... gosh how long ago ... 1 year for us... what fun!

Enjoy! HE HE!

www.caringbridge.org/visit/noahwmartens

Love,

[Guest guest]

hi -

I already posted a resonse and then deleted it because it was a

rambling post @ B's sleep study...

Braden (and I think I remember Noah having similar symptoms for a

while ?) has had B12 deficiency symptoms for quite a while and his

serum levels were actually elevated when they were tested in Omaha

(1-1/2 yrs ago) which indicates liver damage and dumping of B12 stores

but that was during our, no GI wanting to take B on time, so no one

took the info into account..

Has Noah had his methylmalonic acid (MMA) tested ? Or are they going

by serum B12 levels ? Braden's MMA levels are 10 x the high normal

which is a clear indicator along with his low (but not really low) B12

levels of 268 of a B12 deficiency. Apparently from what we have been

told the serum B12 alone isn't always an accurate vitamin level

indicator. Braden's symptoms have been puzzling and the GI sent us to

the eye doctor and the neurologist but it appears that those symptoms

are related to B12 deficiency...that he has likely had for quite some

time.

In B's case at least we have been told that the subligual B12 will not

help him (because he is missing his ileum) so absorption is the issue.

What type of oral or sublingual B12 have they recommended for Noah

before they try the shots ?

Lori

lucky mom blessed with triplets

www.caringbridge.org/visit/bradenwild

>

> Wow Lori,

> How strange both our boys are having the same issues at the same time.

> Can't wait to hear from you... we can share stories.

> Sleep study huh?! Rewind... gosh how long ago ... 1 year for us...

what fun!

> Enjoy! HE HE!

> www.caringbridge.org/visit/noahwmartens

> Love,

>

>