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?

Hi lahgarden,I'm finding your threads interesting! Now what has caught my eye is the fact that you consume soy milk. Soy isn't always a good thing. Have you ever tried ricemilk?

Also, I believe you asked about a neuro perhaps not being the best choice for you to find answers? Have you ever been to an internist? They sometimes like to solve health puzzles (if you are fortunate that is).

And just for my curiousity,what has your SED rate been over the past few years?

Buttons

Hi Buttons, Pabb and Rose,
thank you so much for your in put. It helps alot to think this out with real people and not just stare at articles on line.

As a teenager I could only drink milk if it was "cut" with something, like chocolate syrup...but it got to the point that I would get seriously nauseasous (sorrry sp). The last day I had a glass of milk was Oct 1990.
And then yes diarrhea.

Now I only eat soy yogurt as any kind of milk, rice, soy just gives me the hee-bee jee-bees, I've purchased it but could never bring myself to try it.

What is bad about soy?

My internist tested my b12 at my suggestion as someone else in the horticulture industry had a weird neuro sx, (arm went numb -hospital 3 days- b12 shots) so I figured what could I loose. That was a year ago. I tested at 220 which was "in range", and therefore "normal".......apparently NOT.

I switched neuros in Jan 2006 and brought all my tests and he picked up on the b12.

Internist freaked out when he learned that new neuro was looking at mitochondrial diseases, literally took three steps back from me like I spit up on him............my lactic acid blood work came back elevated once.....

I've had a boat load of tests........but what's a SED rate? What does it look for? Is it called anything else?

what is the connection to weight gain and combined degeneration?
I could stand to loose fifty pounds......sad but true.

I'm going to your site now rose, have you reversed all the damage?
thanks,
laura

I drop in here from time to time, just to read the good information, your post about your B12 issues, spoke volumes about food allergies/sensitivities.
I would highly recommend coming over to the gluten/celiac form, also, like Rose said, Cara site too!!! You could learn tons over there about your diet, and how to heal yourself. Helping yourself through diet is the best way to heal, espeacialy the CNS. Take care, Patricia

Soy can interfere negatively with some meds (not sure about supplements). That's the only reason I brought that up. I never have tried to drink the stuff myself.

SED rate is how slow/rapid our blood settles in a test tube,sedimentation rate. I asked because I've noticed mine has gone down each of the past 7 years from a high of 7 to a low of 1 (where it is right now). As we age it's supposed to go higher,so guess I'm getting younger every year! I even asked my doc what he thought of mine going lower-wish I'd just kept my mouth shut cause here's what he said,"that is GOOD news,it means you have
no cancer,no inflamation,you are HEALTHY". What a quack!!(I have arthritis).

Just want to remind everyone about the proper storage of your vitamins,especially the B's. Keep in a cool,dry place-do not expose to sunlight! And check the dates,I'd throw out anything outdated. Some vitamin shops are slack in their stocking....

Also, might want to research Lyme disease/MS connection. Or just google Lyme & anything else,ie. Alzeimers,Parkinson's,etc. The ONLY reason I'm convinced I have Lyme is because all of my weird symptoms come & go,I've researched alot of diseases over the years & nothing else seems to come & go the way Lyme & co-infections does. When you said you work in horticulture a little alarm bell went off....Lyme is NOT just carried by deer ticks! Deer don't even get Lyme,the ticks fall off & infect other critters that can then infect people.I'd never heard of Lyme disease until I joined a movement disorder forum for myoclonus & discovered the connection & realized I have/had nearly every symptom of Lyme!

Don't mean to get off topic here,we have a Lyme forum but apparently have lost all the Lymies from the OBT! If I can save ONE person from going through what I have these past 8 years it will be worth it to keep spreading some info here & there.....