Originally Posted by matty

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

Originally Posted by complex

Hi there,
This is my first ever to post to anyone, I felt I must as I am just as frustrated too. I found out the end of 2003 that I was B12 def., actually pernicious anemia. I started taking B12 shots Jan 2004 at home myself and will for life.Unfortunately, the damage was already done. I was 39 years old. I couldn't believe it! I already had peripheral neuropathy, carpel tunnel, tarsal tunnel, optic neuropathy and working on bladder dysfunction. Not to mention what it was doing to my memory and confusion, fatigue, etc. etc. etc. the lists goes on. Did anything get better.............NO. Does it with SOME people..........YES.Unfortunately, it did not with me. I thought I was from Mars cause I kept reading stories of people feeling like they could fly just from taking B12 shots! Well, I am happy for them. I had to quit reading articles as they were not helpful for me. I silently started doing research on my own, never mind different neurology care I have been under ever since. If you haven't been told already, you will be told..... B12 carries the same symptoms AND damage as MS except MS has a lot of help out there and resoureces, WE DON'T. If I sound angry, I guess I am, I am frustrated. This disease can tear a persons life apart as bad as MS and other diseases, yet, it gets NO WHERE! It makes no sense why doctors still do not know how to treat it. For the record, I hope you will not be mis led as I was, if you are B12 deficient and try to take EXTRA B12 shots, your body is NOT going to accept it, it is NOT going to do you any good. You will not absorb it. There are, as you know, different types of B12 def. If you have the same as I , you can not absorb it. Believe me, I have tried this, it doesn't work.
It is July 31, 2007, 3 1/2 years I have been on the shots, my symptoms are worse, the neuropathy is a nightmare, today my neurontin was increased to 2100 mg per day plus starting Cymbalta for Neurapathy as well, not to mention the other 13 meds. I am on, thanks to B12 I felt strongly that I wanted to post to you as I could understand your frustration and I have never done this before and I can only hope that somehow we can one day see a difference in our own doctors here in our own country that do know more on this disease. It is treated like the old TB days! If you search on the internet, as I did recently, I just typed in " doctors that specialize in B12 Deficiency", and blood disorders. I came up with a few. You may have some luck. I hope you do. Neuro's and Internist are usually the best with this although most are limited. If you can ever find an older militray medicine outside doctor, grab him They have delt with a lot of varities! Believe me.I am seeing only military doctors as my husband is in the service, but one day I landed in the hands of a " military medicine doc" that is usually only for them, he helped me so much and got me on the path to walking and off crutches! But,they work on the outside as well. I know this was long, but I sure hope something in this can be helpful to you. Sugar coating things is not going to help you. If someone would have let me known what I was heading for, I would have probably handled it better. It was very tough and still is. The best of luck to you. I wish you well. Hang in there!
P.S. I chose "COMPLEX" because my docs. always say my case is always so complex lol, just like you say, I always got to try to laugh about this or I will go nuts take care!
COMPLEX B)