Got a message from my neurologist today that B12 is low and I should follow
up with PCP and expect shots for life ( oh joy, such fun). It was fatigue
and brain fog and hand numbness - tingling that got me to neuro. I think
I,I'll follow up with rheumy instead.
Does anyone have experience with this and MCTD.
I wonder if boosting immune system with this is really a good idea?
I should know more a few days but I'm looking for some general info now.
Chaos Hill - 25 May 2004 01:14 GMT
have had this experience myself and yes the B-12 shots made a world of
difference, also in energy level and mood - by all means give it a try
Leslie
> Got a message from my neurologist today that B12 is low and I should follow
> up with PCP and expect shots for life ( oh joy, such fun). It was fatigue
[quoted text clipped - 3 lines]
> I wonder if boosting immune system with this is really a good idea?
> I should know more a few days but I'm looking for some general info now.
Maggie - 25 May 2004 06:13 GMT
Hi John!
About boosting the immune system; I avoid it personally. There's
probably a happy medium, but I don't know what it is, so I don't do it.
Do you have autoimmune gastritis? I'm confused as to why they say you
need the B12. I think the name of what BJ has/gets is Pernicious
anemia. It's caused by autoimmune gastritis & therefore, causes B12
deficiency. Here's some info on it & on the left menu you can find
every AI disease in the book.
http://www.celikey.net/templates/Page____2190.asp
Sharon has UCTD & from what I've read, the MCTD is sometimes referred to
as UCTD. Have you seen her story? It popped up in my search, so I'm
posting it for you:
http://qcpages.qc.edu/~sperlof1/
I think the neuro kinda went overboard with the B12 life sentence, or at
least I hope so. That just sounds kinda drastic. I'm sure you will
feel much better though & hopefully, you'll see enough improvement that
it'll be worth the inconvenience. <fingers crossed> Let us know how it
goes, k?
Maggie
KCat - 25 May 2004 16:19 GMT
> Sharon has UCTD & from what I've read, the MCTD is sometimes referred to
> as UCTD. Have you seen her story? It popped up in my search, so I'm
> posting it for you:
Just to clarify as it comes up now and then:
UCTD and MCTD are often *confused* but they are not the same thing. The U
stands for Undifferentiated as in "we don't really know what connective
tissue disease this is but it is a connective tissue disease." The M stands
for Mixed wherein a distinct set of diseases have been diagnosed together
(lupus, scleroderma, polymyositis/dermatomyosits, CREST)
B12 is standard treatment for nerve damage caused by lupus as well as that
caused by Multiple Sclerosis. One needn't be deficient in it to warrant
taking it for these conditions. If it helps, then I'm all for it
personally. It's a pretty safe treatment that is known to be helpful in
many patients.
HTH.
J - 25 May 2004 07:44 GMT
> Got a message from my neurologist today that B12 is low and I should follow
> up with PCP and expect shots for life ( oh joy, such fun). It was fatigue
[quoted text clipped - 3 lines]
> I wonder if boosting immune system with this is really a good idea?
> I should know more a few days but I'm looking for some general info now.
As far as I know, B12 does not boost the immune system.
BJ has pernicious anemia. She gets B12 injections for life .
She started with one injection per week for 10 weeks, then gets an injection
monthly (and the monthly bloodwork rechecks that).
I was B12 deficient. I had the same regimen (one injection per week for 10
weeks), then a wait for a bit, then bloodwork recheck. AOK..so now I get a
recheck every 6 months or so. If I start going "low" again, will restart the 10
week regimen, then recheck.
The shots are subQ? or in the muscle of the shoulder or the hip/butt. Some
people (if money is an issue) can get 1000 units prescribed then give
themselves the shots. (100 units at a time).
More on PA and also B12 deficiency
http://www.nlm.nih.gov/medlineplus/ency/article/000574.htm (leads to other
links depending on the type of anemia)
http://www.postgradmed.com/issues/2001/07_01/dharmarajan.htm
Some people do need it for life or very serious symptoms can occur. Some people
cannot get enough via the gut so B12 vitamin pills do not "do it".
J
KCat - 25 May 2004 16:21 GMT
> Got a message from my neurologist today that B12 is low and I should follow
> up with PCP and expect shots for life ( oh joy, such fun). It was fatigue
[quoted text clipped - 3 lines]
> I wonder if boosting immune system with this is really a good idea?
> I should know more a few days but I'm looking for some general info now.
this is an interesting coinkydink. just this a.m. received an email from a
friend who is trying to figure out exactly what is causing her neuropathy
and she just mentioned that they are checking her b12 level again. hmmm...
but, as J pointed out, B12 isn't going to boost the immune system. It has a
more specific function than such vague "immune enhancers" such as echinacea
and so on. And as I mentioned in my reply to Maggie's post - it is a
common, accepted treatement for neuropathy.

Signature
I am not a Lupus/Fountain Pen Expert. I am not a Medical Doctor. I do not
make my living in medicine or in fountain pen repair. All opinions herein
are based solely on my experience and observations. Take them with a grain
of salt (unless you have high blood pressure...<g>)
BJ - 06 Jun 2004 13:25 GMT
Hi John,
I am trying to catch up on posts. I have been away and am late in replying
to yours. I read through the responses and I have some things to say in
summary. You can be deficient in B12, just like you could be with other
vitamins. Getting injections will not boost your immune systhem. I have
pernicous anemia. I have the megaloblastic red cells, and the neuropathy
that can accompany that condition. My neuro signs were severe. I even had
jerky movements when trying to walk. The neuro problems can not be reversed,
if treatment is started too late. Peripheral nerves regenerate with
treatment. Spinal nerves do not. I get 1000 units a month, injected into my
shoulder muscle. The shots are always given in the muscle. I got that dosage
every day for five days, once a week for a month, then every two weeks until
another month had passed. I will get the shots for the rest of my life. It
isn't a big deal at all. You will likely find it makes a big difference. It
may really help your neuropathy and your thought processes.
BJ-Sk. Canada
> Got a message from my neurologist today that B12 is low and I should follow
> up with PCP and expect shots for life ( oh joy, such fun). It was fatigue
[quoted text clipped - 3 lines]
> I wonder if boosting immune system with this is really a good idea?
> I should know more a few days but I'm looking for some general info now.