b12 and flare ups
 

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

That is common in the recovery process
 

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

hi again
 

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

Diagnosed late in '98
 

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?

Soy
 

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

milk, soy, confusion as usual
 

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

Hi lahgarden
 

I drop in here from time to time, just to read the good information,:D 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 & SED rate
 

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.....

Soy....
 

Soy is not "bad"...but people with food intolerances may have an
intolerance to soy as well. Not everyone, of course, but some do.

Heavy consumption of soy, can lead to thyroid issues...and that is still
controversial. Soy contains phytates which complex out certain minerals, like zinc. Just using it occasionally is usually not an issue.

If you are lactose intolerant, then Lactaid milk is an alternative. It is ultrapasteurized as well, so its expiration date is much longer, for those who
don't use it alot, and find regular milk goes sour fast.

It is hard to say whether you are lactose intolerant or caseine allergic by your posts, Laura.

getting younger every year!
 

That is very funny Buttons. You crack me up.

Seriously, what are the myclonic attacks like for you?

Yes, out of the five core employees at the nursery, two have gotten lymes and one of them got it twice.

I've had deer ticks bite me, but never a rash. My last spinal tap got sent with the blood to California, one of the two best testing labs in the uS......I'm kinda pretty good with the thought that it's not lymes, but I will look into it more.

Have you ever had deer ticks biting you? Any rash? Fever?

I'm glad I found this place, it has forced me to re visit the vitamin issues, and get back on track. So far so good, but I have not re-introduced the SAM-e, and may not.

My DM, said not to add b3 unless I spoke to nuero, mentioned overloading my kidneys.....probably a good idea.

I'd also like to add the Omega 3,

Which is the best Omega 3 to get?

I am so overwhelmed by the gluten site, but I have written down the blood tests and will ask for them to be done too.....or should I just start experimenting with the diet? And not put wheatgerm (more good b vitamins) in my soy yogurt EVERYDAY!!!???

o brother.

But I am starting to understand that perhaps with the milk problem, maybe this has been going on for a long long time.........

Question:

Isn't calcium one of the receptors that b12 must bind to in order to be available??????????? And so if I only eat cheese once a week and no milk since 10/1990..........could that be a clue as to the culprit?

The soy yogurt is something very new for me, I've been eating it for about
six months and I don't feel any adverse affects........that I'm aware of.

I am going to look up the caseine allergy, I've never heard of that thanks!

laura

Hi lahgarden
 

I thought that I would tell you what happened with me and food sensitivitys.
I've had IBS for most of my adult life, it was really not that big of a deal. I kinda learned to ignore it. I ate mostly healthy foods, next to no juke, organic etc. Then in 1997 my mom bought my husband and I a bread machine, that was great, we ate bread in a variety of ways, eveyrday.:D :D
Over the next couple of years I started gettting more IBS issues, headaches, dizzyness, tingly hands, face, feet, mouth. Shaking inside,like small temours, wierd disassociated feelings, lost in space, I call it:D And lots more stuff, I evently had to take a leave of absense from work, I've never been able to return. :(
I happened upon this site a few years ago while doing research for MS, this is what the drs thought I had. I wasn't testing postive for anything. Anyways I had persivered with this one dr for a good 4 yrs, then I left him, because he wasn't helping me at all. I then went to a new dr and I was able to get my medical file in my own hands. I read that my B12 was 243, I cried.:( For the last 4 yrs I could of been taking B12 and healing myself, but the drs was so dumb, he never even mentioned it.:mad:
Well it was through this site that I learned that my IBS was gluten sensitivity, one week going gluten free, my energy level went way up, 4 weeks into the plan, I learned that milk also made me sick, and that soy gave me a bad headache and pain all over my body. Little by little I am feeling better, I know that it will take years to repair, but at least, I'm repairing.:D
I hope my story inspires you to keep looking and learning, take care, Patricia:)

turner
 

I'm so sorry you have been through it huh?

the b12 sounds all too familiar. My first test was in Sept 05 and not till Jan 06 did anyone do anything about it. I was already sick for three years.

My first neuro was a scaredy cat and just kept telling me it was "too early in the disease to see it"........I asked on a peice of paper? "yes" Well I'm not a peice of paper I felt like saying.

Then I asked which disease? and she made a frowny face and said "O there are so many to choose from." and fibbed about my lp being normal.

I too didn't know till I got the reports.

It's awful to be robbed to health and time and Lord know's what else.

I read the book Could It Be B12?
But everyone in the book made such rapid progress.

I'm glad you shared your story.
I am gonna start collecting info on the milk intolerance and gluten to a computer document so I can sift through it. Like I started with the b12.

Do you take shots of b12? What other vitamins to you take?

Were you ever dx with subacute combined degeneration?

thanks for listening.
laura

Progress
 

I haven't read the book, but it is common for people to be diagnosed when certain signs show up (megaloblastic anemia or obviously low B12 serum). Those who are caught early enough will almost always make rapid progress and repair the damage within months.

However, those who are prone to more neurological damage, and are not diagnosed or treated until much more severe damage has occurred, have a much more difficult recovery and the likelihood of much or some damage being permanent.

In those cases, progress can be difficult and occur over several years.

rose