Subacute combined degeneration - B12 deficiency
 

My husband has been ridden with weakness and pain from PN, which turns out to be just one of the many problems associated with what I've finally learned is his diagnosis. We learned too late that merely testing for B12 levels isn't enough (See the wonderful Mrs. D's posts to learn more (and I meant that wonderful both ways, the posts and Mrs. D!). I'd urge ANYONE facing unexplained and rapid onset of PN and a host of other problems to consider this advice:
"Blood tests, including a complete blood count (CBC), vitamin B12 blood level, or methylmalonic acid blood level are used to diagnose anemia or vitamin B12 deficiency" from the NIH site (haven't posted enough to give the link, googling should get you there, though!)

Anybody else dealing with this? Randy's seems to be progressing, despite daily B12 Methyl.....not sure how much of decline is from being bed bound and/or possibly overmedicated. Thanks as always!

found the old threads!
 

The technology on this site is so incredible, I see the similar thread posts on the bottom of this post and am reading up now....

It can take a long time to recover functioning with this serious condition, I am sorry to say.

What treatment is he getting? I'd make sure he is not shuffled off into the once a month injection!

5mg oral methylcobalamin daily on an empty stomach for a while and maybe for a LONG time.

PN can be due to other things too... gluten intolerance leading to malabsorption, is one. If another factor goes unidentified, recovery may be slower or minimal.

Hi, I to was dx with B12 deficiency and I now take a B12 shot once month along with 5000mg of B12 daily. I also take Neurotin for the nerve damage that occurred. My deficiency lead to a neuropathy in my legs, feet and hands. I had to stop working and retire. It is still an ordeal as daily it takes everything to move. I can not understand some things as I was blindslided with this and it has been (2) years since. The doctors have said they can't do anymore. I don't wish this on anybody.

Casey

Sublingual B12 is effective, I do that every few days, not daily now that I don't need as much.