Hello again everyone,

I am so frustrated by this b12 disease.

I find that I am more often sick than not.

I don't understand why weekly injections for four months, are not doing anything.

I may feel okay for as much as a week , a week and a half and then
the whole business starts over again.

Seeing blind spots (scotomas) fatigue, spasticity, slurring speech, cognitive problems, balance problems, sensation of motion, burning pains, and more....

Some times the symptoms are condensed over a day to three days, or like this time over a whole week and up to as many as four weeks.
This time it came at the tale end of a UTI which came out of the blue.

Is this what others go through?

Doc says "possilbe ms", and I don't know if ms folks go through this many attacks over and over and over. It seems ridiculous already!

Am I supposed to call my neuro everytime? I mostly save up symptoms and check in with him every three months.

Help!
thanks for listening,
laura

There may be another problem, but what you describe is common for someone who is getting B12 after having needed it for a long time.

Besides the shots, I hope you are taking at least 1000 mcg per day (all at once, not timed release). The constant supply of B12 help more in many cases over the long term.

Four months is a very short time when the central nervous system (CNS) has been affected. And the body can be hard at work on a problem unbeknownst to the patient or doctor. Often during those times symptoms are even worse, as the body works on the electrical system.

I hope you are also taking a B complex and at least a multi vitamin. Also, fish oil would help your body keep inflammation down and rebuild myelin that may have been damaged.

The repair process can be much more difficult that the downhill process. It is more difficult to build than to deteriorate. And nerves are very strange. Repairs can continue for several years. You are not guaranteed any repair, but usually there is at least some, and even the CNS can recoup to an amazing degree, but over much time.

rose

Thanks an awful lot Rose for answering my questions.

When did you get sick? How long till you got dx? Are you better now?
do you have a dx of subacute combined systems disease like me?

I don't take additional b12, do you advise the under the tongue kind?

I am searching through the other links on these threads, and am getting lost.

I can not tolerate milk, and have had that problem since a teenager.

Over the years the list grew, to ice cream, yogurt, alot of cheeses.
I totally avoid milk and ice cream and yogurts.

I do not have any bowel or stomach problems, occasional heartburn, which I just live with. I don't eat antacids.

These days I eat soy yogurt every day with cereal (hey vitamins are sprayed on) and nuts mixed in or wheat germ. A "dietician" recommended it because she was concerned about osteoporosis later in life, but she didn't address any of my b12 problems........

I have defieciency in the following amino acids
glycine
theronine,
aspargine
nistidine
ornithine,
lysine

but don't really know what that even means.

I started to look at the celiac disease, and saw a neuro vitamin link and got confused with one of the b's and it being found in wheatgerm, but then you couldn't eat that if you had celaic right?

O my foggy brain.
any direction for me?
thank you so much for listening
laura

oops,
I forgot,
kidney business, so there is a long list of kidney stone things I'm not supposed to eat, but do on a very very limited basis.

I have medullary sponge cysts in both kidneys.

Is there a special doctor to see for SCSD? or just the neuro?
thanks again.
laura

I was damaged very badly by then, yes combined degeneration.

I don't have the digestive symptoms, but many people do not. Ironic to be dying because of a severe digestive problem and have no digestive symptoms, but that is what was happening to me. Also I was gaining weight rapidly: so many ignorant doctors assume that all being damaged due to malnutrition will lose weight, but of course that is not true at all.

I hope you will go to my website under construction (link below). That will answer some of your questions about B12.

Also I hope you will do some reading on Cara's site, which will address some of your food sensitivity issues: http://jccglutenfree.googlepages.com/

rose

what are your issues with milk? diarrhea or constipation; or something else?