Hi, I'm glad I found this forum and am hoping this will help me out with my condition. I had a Roux-en-Y in 2002. I was diagnosed with Vit. B12 Deficiency in Feb. 07, which, I found out later it, I was deficiet for over 2 years time. I was put on Cobalamin injections once a day X 5 days, then once a week, then once a month. This has been increased to every other week. I also take the Methyl 5000 mcg SL tabs twice a day for supplement, which has helped tremendously since beginning.
At this time, I am experiencing a LOT of CNS problems and would like some input for some of your members. I am especially needing this input as I have found many of the "specialists" are way behind the times with this syndrome. I cannot find a specialist who knows how to treat me and am developing more and more symptoms, thus feel emotionally and physically like I am slowly going down the 'tidy bowl drain'..... I don't want to end up paralyzed,which I know can happen...you see, I am a RN with 2 Master's degrees....and even I can't find the appropriate doctors.....Lord help the average citizen. This has been an eye-opening experience for me.... I have an array of symptoms that hit me everyday, sometimes these 'come and go' when the day is a bad day, like when I am extremely tired out, as I am still working full time and the ward/job is very physically tasking:

• loss of appetite (I never thought I would complain about this!)
• extreme and overwhelming fatigue
• horrible left arm pain, with marked weakness
• when extremely tired, the other extremeties also begin having the same pain
• Weakness
• Cognitive 'fogginess'
• Loss of memory
• Tinitus or ringing in the ears w/documented hearing loss
• Tingling in the hands and feet
• Flu-like achiness
• Loss of Coordination/Dizziness
• Depression .....go figure!

It will be a Blessing to have the emotional support from others who have experienced the same symptoms, while I would never wish this on my worst enemy, at least they would know it's "not in my head" and I am making it up )
Please excuse my sense of humor, by the way, it is my coping mechanism. The more I'm stressed, the more it flies! My motto has always been:

If you don't laugh at life, life will laugh at you!
and hey, I'd rather be the one laughing!
Nice to 'meet' everyone!

Hia there.
Just read your message and felt compelled to answer. I'm not B12 myself but my wife is. She's been getting treatment since August 2006 after suffering symptoms since her teens, at 25 yrs old and after our 2nd child her health hit rock bottom.She was told she had MS after a series of tests (none of these a stand alone B12 level) this was in 2001. She has partial vision right eye, partial paralysis right leg , at time of starting treatment she had massive neuralgia pain down right side (electric shock pain), debilitating fatigue. Right on the time of menstruation she would have dizzy spells and had started passing out regularly. She would go cold and clammy and shake uncontrollably, this would last perhaps an hour or two and she would have to rest at least 24 hrs to recover enough to be allowed out of bed!

We were lucky enough to find our present doctor who's been fighting for a change to medical diagnosis in Britain and hopefully the world. He sent for B12 test and it came back level 175. My wife's injections were daily for about one week, then every other day for about one month before going to twice a week, then once a week then once a month.Early in the treatment the difference was amazing, 60% reduction in symptoms at week one of treatment and some regain of mobility at one month.Whilst on once a week we both noticed her symptoms would return at day 5 (mood swings, fatigue, mobility probs). We voiced our concerns but treatment had to drop to once a month to follow the set pathway of care. We have noticed a decline in her health and she recently was told could go back to twice a month injections.

My personal view as a layman (but expert as an eyewitness!) is that she dropped to once a week too soon. Injections should have gone to every 5 days before weekly, then 10 days before two weekly etc. and only changed when my wife felt strong enough. This is a condition largely diagnosed on symptoms so why can't the symptoms of recovery be trusted when considering a reduction of medication. You don't take sleeping tablets away from an insomniac after they've had one week of normal sleep. You don't take insulin away from a diabetic after one week without a hypo attack! (imagine the lawsuit on that one). Why should it be any different for B12 sufferers?

Sorry to rant on so much, I ought to climb off my soapbox and get to the point. On reading your story, the injections have fallen off too soon, therefore your symptoms return because your body can't utilise the sublinguals for anything other than "a quick fix". To aid your recovery the injections need to be more often for a longer duration, until you feel well enough to reduce the time between them. Remember that more chronic conditions are going to take longer to repair. B12 is used by every cell in the body and needs it as much as it needs water or oxygen - that means every cell in your body has been starved and needs to repair - this is going to take time and the recovery will be in peaks and troughs so you've got to ride out the storm every so often. Please don't take no for an answer from your doctor on the regularity of your treatment. Beg or threaten, whatever works. Put it to your doctor they need to read up on this condition. There's a b12 support site in Britain that's got some great info and there's a professionals section so doctors can find out a pathway of care that works really well for most patients. Ask your doctor to look on it or join it yourself and sign up to the professionals part if it will let you, print it and show it to your doctor and ask for that level of treatment - you deserve it.
good luck and God bless.

Also, one final thing. It's worth checking your family history. If you didn't know already, this is genetic and 70% of time runs with females. Look for history of anaemia, any neurological condition, altzheimers, behavioural disorders, depression and psycological disorders. If you have kids keep a close watch for early symptoms and signs. My wife has had on/off anaemia since the age of 15 as well as depression and mania.

If patients can fight this together we can force the doctors to listen and to follow their medical code which is first and foremost to care, and to share info with collegues.

Sorry again to sound off so much, I'm not a nutcase (yet!) but am very passionate about this topic as it's changed my wifes' world and given her hope for a quality of life she could only dream and pray for until recently. If you answer me on this one I promise the next will be much shorter!

Matty

Good for the doctors. Diagnosis and more aggressive treatment than most.

Matty: It is very unlikely that your wife is not getting enough B12. That is frequent enough for almost everyone to rebuild stores quickly.

It is not true that the methylcobalamin RN is taking orally is only a quick fix. What she is doing is more likely to fill her stores with usable B12 (methylcobalamin) more efficiently, and in addition to being as good or better than shots, the long-term lab results are usually better with at least 1000 mcg oral B12, even the less efficient forms.

Regarding symptoms, it is very common for people who have had significant nerve damage to experience extreme fatigue and temporary increases in symptoms (even new symptoms) as the body works on that particular area.

RN:

Please read the above regarding common symptom increase during healing. Also the use of methylcobalamin (YES! Good for you).

And if you are depressed now, and weren't before, it is likely that your body is working on that area now (much better than a few years later, as in my case). You may be on a fast track. I hope so.

Both of you: Please read my website if you haven't already.

rose

If you want to continue a discussion of the above, please continue in this thread. That will make it easier to keep all of the information together, which will be easier for me, and more helpful for you and others.

rose

Thanks Matty and Rose for your responses. Matty, I'm sorry to hear of your wife's experience. What a scare for her and for you! I've done a lot of research on this since I was told I have Vitamin B12 Deficiency. I was amazed that there is not a whole lot of up-to-date treatment plans available, nor are their doctors that are up-to-date on the treatments. This deficiency attacks our body in such a weird fashion that in many times, it goes undetected by doctors, or is misdiagnosed for years. The longer we go without the proper treatment, the longer we have a potential for permanent damage.
My left arm feels like a knife is stabbing me at times. It scared me when this slowly started in my right arm also. Getting the doctor (my neurologist) to listen will be hard. He believes my left arm pain is from a torn rotator cuff and a pinched nerve in my left elbow, not the Vit B12. He doesn't have an answer why it is effecting my right arm also.
Matty, don't apologize for a 'lengthy' post! I didn't find it too long, in fact, I enjoyed reading your post and the vit. b12 website was very informational. Thanks for sharing! I know what you mean about decreasing the injections too soon. I about died when my new doctor wanted to decrease my cobalamin injections from every other week to once a month.....I put my foot down big time! If nothing else, they need to be increased! I am so wasted by the time I get home from work, I am not worth a penny. If I sit down on the couch for a minute of two to talk to Bill, I'm out like a light for hours on end.
Rose: where do I find the "Please read the above regarding common symptom increase during healing" I really appreciate the help you are giving us.

Another story of doctor not understanding enough and patient is suffering...

Well just to share..RN4Veterans... my wife had same symptoms for a while now ....all those you mentioned below plus heavy/long periods .
I think it's been more than 2 months now she has been taking methyl B12 ....started with 1000mcg then increased to 2000mcg per day as doctor said she is malabsorbing. This site was extremely helpful in getting more info. about b-12 experiences and special thanks to rose.

It's very surprising and sad that not enough research has gone into b-12 , may be because the treatment is simple and cheap so it does not fill up the bank balances of big drug companies !!

But to come back to point , my wife symptoms has not gone away in last 2 months or so ..she feels depressed irritated as she used to do before in addition to that sometimes she feels weird ...she cannot explain it . Overall I think her body resistance has increased ...slight improvement but not much . May be she has been deficient for couple of years now ..so it may take more time ..don't know ??

But it's always good to share experiences ..that's how we can learn more.
Good luck.

RN,

Sorry I wasn't clearer. By "the above" I meant in my reply to Matty.

Unless you are very rare, you do not need a more frequent shot schedule. In fact, you are doing more for yourself with the methylcobalamin you are taking. Way better.

Did you mean my website? If so, I'm so glad you found it helpful.

Individuals are different, but I also had a lot of problems with my shoulders and arms. They took turns being the worst for a very long time, and one became frozen. They say a frozen shoulder doesn't recover if not within the first year, but mine took more than two. As with many of my areas of damage, it took years but finally resolved (or nearly so).

rose

Med,

Yes, the problems have probably been developing for much longer. And repairs can continue for many months or even several years.

Hang in there. A couple of months is a very short time. And, in fact, it is common for the body to get down to working on some of the long-term serious damage months into treatment.

rose

Med Help, I can relate to your wife's depression and feelings of 'weird', because the symptoms are overall weird in themselves! They can come and go....hit with such intensity in an extremity then feel like it is going to spread to other extremities, then resolve. Like I said...weird, then hey...the doctor looks at you like "wow....she's a nut case" and I'm not one to take that from anyone...much less a doctor, thank you )

Rose, you don't know how much hope you have given me with your explanation with: temporary increases in symptoms (even new symptoms) as the body works on that particular area and Individuals are different, but I also had a lot of problems with my shoulders and arms. They took turns being the worst for a very long time, and one became frozen. They say a frozen shoulder doesn't recover if not within the first year, but mine took more than two. As with many of my areas of damage, it took years but finally resolved (or nearly so).....
I have put my Left arm pain down to incorrect treatment of the Vitamin B12 Deficiency, thinking that I should be getting more of the supplement. Why else would I be developing more and more problems? I hadn't run across any literature or research on this anywhere and was scared to death that I was going to end crippled. That is why I started myself on the SL supplements twice a day. How long did it take for your arms to recooperate?

I was badly injured, and my shoulders were affected early, before I had any idea I had a problem. Fortunately, my regularly impinged shoulder nerves eventually stopped doing that, and the frozen shoulder recovered, BUT it took at least a few years for my shoulders to cease being a constant problem.

That does not mean that anyone else will have a timeline like that: types of damage, extent of damage, recovery, and timelines vary tremendously from person to person.

Unfortunately, very few docs know a thing about the process of repairing nerves. Those who do know tend to concentrate on the results, rather than the process. That's understandable, but it sure does leave almost all patients in the dark.

Best to you,

rose