B12 defficiency and its effect on your life

[dorvad]

Normaly I post on the PN site , as I did not see this one.

Although I live in Australia, I was born and brought up in Scotland.

I was diagnosed with Subacute Combined Degeneration of the Spinal Cord when admitted to hospital in Oct 2004, this was caused by a severe B12 defficiency that was not picked up for about 10 yrs, cause unknown after a miriad of tests.

I was then put on Monthly injections , this was then changed to fortnightly injections after consultation with my neurologist

I believe that as this condition progresses you can suffer from Spastic Paraplegia as I now am.

Questions

Do any of you have the following symptoms.

Getting int the car, Bottom on seat 1 leg in and 1 outside that just wont move for a period of time.

When you lie down at night time do you lose the ability to move your legs for a period of time

Do you have instances when even when you are out walking you stop and then cant move your legs for a period of time

Sitting down for say about 1/2 an hour and then when you try to get up your legs wont support you, infact at times I need 2 people to support me to get up.

My Neurologist says that there is nothing else he can do to assist me, please if in doubt about your B12 levels shout and shout loud untill some one pays attention.

[rose]

Over the years, as so many huge problems nearly or completely disappeared, I have developed secondary problems similar to what you mention. The motor problems appear to be the least likely to go, and over time spasticity, dystonia, and Parkinson-like symptoms can appear.

That is likely what is going on with us.

On the positive side, I can stand for a fairly long period now (for about the past two years) vs a long period before that when standing for 30 seconds was a giant feat.

rose

[jcc]

I did not have those symptoms, thankfully, but I was lucky to have caught it relatively early as my symptoms were just starting to cross over from nuisance to serious.

I'm sorry to hear you went undiagnosed so long.

Cara

[dorvad]

The condition I now know is called paraparesis or hemiparesis, for want of a better word paralysis.

My Rehab Doctor and my Neurologist have both said there is nothing more that can be done.

You know what really annoys me about this condition is that is not taken seriously by some people, it has all the effects and symptoms of MS but none of the back up.

And when you have to face something that is not normal about the condition ie paralysis, you face it on your own and with the ones you love.

My GP,s have never seen this condition as bad as this.

Sorry if my words show a bit of anger as that is not my intention, I suppose it is just my frustration at being the only one.

[rose]

The more conservative treatments are toward the end,so read the whole thing.

http://www.emedicine.com/NEURO/topic706.htm

rose

[Sophie Chumley]

Rose

I have been reading your website and it is great. You don't have an email direct on your site yet so have found you via this route - hope you don't mind.

I'm 39, female, wife, mother of Seth 2.5 years.

There is alot of info and I am new to all this. Had b12 test done and shown a level of 88 !! My doc said he hadn't heard of anyone that low before. Had shots and tabs for the last 2 months - felt good after the shots for 48-ish hours then flattened out to what seems like the constant fatigue state, confussion, depressed etc. I went to my doctor saying I didn't feel right and he has been, to date, really great about listening to me and seems to be taking me on as a whole person and seems to be paying attention - so far.

Two weeks ago I had to go to ER due to huge pain in my right shoulder. I hadn't done anything to leave me thinking I was injured - just woke up with the pain. Xrays showed calcifications but nothing more than that. Had an MRI done and it shows a tear of muscles and fluid build up - no kidding it was painful!

My question to you: Could the b12 deficiency be related to this tear? My doc suggested I stop taking the pills until I see him (tomorrow) after which I think I'll be on a course of physio-therapy. I've never done vit tablets well - they end up leaving me feeling queezy and generally icky - these recent b12 ones do too. I was taking them every other day to be honest.

Your thoughts would be appreciated.

Sophie Chumley.

p.s. Many thanks again for your time in sharing all the info you have learned over the years.

[dorvad]

With these levels of B12 please dont just stop, this condition is very serious, I should know because I am now suffering paralysis in hands and arms as well as my legs, and I have been told today there is a distinct posibly that I will have total paralysis of both arms and legs that news was like getting hit by a bus.
But I am damned if I will given in.
Don't Don't Don't take this condition lightly.

[Sophie Chumley]

Dorvad

I'm realising with all that I am reading it is serious and I will certainly make that point with the doc today. It is all so overwhelming - thanks for your comments.

Sophie.

[rose]

I'm glad you went to my website and found it helpful. And I appreciate questions here: by asking here a lot more people will benefit. I may eventually add an email link to my site, but I'm too preoccupied now and cannot guarantee responses.

No way for me to know whether the tear is related, but I can tell you that muscle imbalances can cause us to do ourselves damage before we are aware of them. Could be a relationship.

Anyway, I sure do hope you will keep up that B12, take methylcobalamin everyday if you can get it, and a good B complex.

Best wishes,

rose

[Stetson]

I am having trouble with my feet and take 2000 mg of b-12 a day.I feel better. The injections are the most painful shots I have ever experienced in my life! Does anyone else have a funny taste in their mouth after the shot?

[bigdrig840]

Rose

My question to you: Could the b12 deficiency be related to this tear? My doc suggested I stop taking the pills until I see him (tomorrow) after which I think I'll be on a course of physio-therapy. I've never done vit tablets well - they end up leaving me feeling queezy and generally icky - these recent b12 ones do too. I was taking them every other day to be honest.


I think everytime u feel nauseous, try taking the vitamins or medicine with food, i guess thats teh catchall solution for these types of problems. I sometimes hafta take my serouquel with food, becuz it makes me restless if i dont. then again i have gained like 20 pounds mainly becuz i eat at night sometimes-oh well. hafta get some more exercise.

[tinglebell]

I have been taking B12 shots for almost 2 yrs, give them myself, and usually don't feel much at all. I use my thigh and go straight in with the needle, a 27 gauge. A couple of times it stung, but it's probably because I was too close to a nerve. Also, I have never noticed a funny taste before, but since my concentration is so bad, I might not notice. I also take SL methylcobalamin at least 3 or 4 times a week. I also have subacute combined degeneration and have many clumsy/airhead moments where I trip and bang into things.