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Gait and proprioception problems without SACD?

theverytiredperson profile image

I'm currently receiving injections for a B12 deficiency which was diagnosed by my neurologist. The pins and needles in arms and legs are what alerted him to it, rather than really low serum B12 levels.

My husband has noticed me walking differently for the last few months, and sometimes I notice my left foot doesn't seem to lift up as high as my right one every now and again, and scuffs the floor instead. I have also had tendencies to knock my arms and hands on things as I go past them for a long time. I had always thought that I was just a bit clumsy.

I'm wondering if these are also related to the B12 deficiency, although from my reading I understood them to be symptoms of SACD. My neurologist says my brain and spine MRI scans are clear and do not suggest any damage so I assume this means I don't have SACD.

Can the gait and clumsiness issues can be caused by B12 deficiency in the absence of SACD?

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11 Replies
pvanderaa profile image
pvanderaa

Yes. Gait issues and foot drop as well as bumping into walls as well as dropping things are all symptoms of neurological damage from a B12D.

SACD is the final stage and the only symptom recognized by the government for any kind of medical disability. You don’t want to get that bad.

You need injections of B12 every other day until there is no further improvements and then you need a weekly maintenance dose to halt further progression of neurological damage.

You will need folic acid supplements up to 5 mg per day but start with 800 mcg and build up to what you can tolerate. Spread the folic acid throughout the day. It is a balance between B12 and folate but get the B12 sorted first as folate can mask neurological damage. However it is essential for repair.

You will also need a multivitamin to replace the metals and minerals used up by the metabolism.

To stimulate nerve repair, gentle range of motion exercises to move the muscles and stimulate the nerves. The repair occurs as the nerve is used. The adage goes, like teeth, only exercise (brush) the nerves (teeth) that you want to keep.

I’m not medically trained but have the same symptoms. I’m on weekly cyano injections.

I also take trimethylglycine (TMG) to support the processing off of excess homocysteine which is thought to strip myelin sheath as part of a normal nerve maintenance process that runs amok in a B12D.

Start a logbook of all your symptoms and do your own daily assessment of the severity of each symptom. The repair of nerve damage is extremely slow so in 6 months look back to see how the severity assessment has changed.

With B12 injections you can feel like you are on a roller coaster ride, feeling great one day and like total crap the next. So day to day progress monitoring doesn’t work.

Instead, reset your logbook to day zero at each injection and compare your severity assessment to the same day in a previous cycle. This provides some meaningful comparison of progress.

For nerve repair, symptoms get worse before they get better. Typically in the first three days after the injection. This is an illusion because the repaired nerve is sending stronger signals to the brain and it takes the brain about 3 days to recalibrate. Stress and worry about this additional pain or hunger/anxiety just delays the recalibration and make the symptom seem worse.

Gentle exercises help convince the brain that the pain is not really as bad as it seems. Lying in bed just seems to make matters worse. Pacing your self and working through the pain, you will find you get through the day and the pain disappears. It’s the getting started that is the hardest.

Track all your symptoms. The ones that occur right after the jab are “good” indication that nerve repair is occurring. The more severe these symptom are, the more deficient you got before the jab. So this can also give you an indication that you need more frequent injections. Things like ravenous hunger is one of my symptoms due to my vagus nerve repair.

Increased anxiety is another. The trick is to step back and treat everything like a symptom and monitor as many as possible. As you improve you naturally get on with life and do more, and you over do things and feel like crap but keep assessing the severity and log it.

You can also log your food, drink and meds and look for a 3 to 48 hour delay in the onset of a symptom, or sequence of symptoms, that progress as the offending food progresses through the gut.

I developed gluten and dairy intolerances. But maybe they contributed to my deficiency as well and we didn't figure it out until after getting injections and some specific symptoms continued.

fbirder profile image
fbirder in reply topvanderaa

DO NOT BUILD UP TO 5000 MC OF FOLATE!

b12science.com/B12Science/D...

pvanderaa profile image
pvanderaa in reply tofbirder

Who are the authors? I thought you only quoted peer reviewed papers?

They make a statement but I can’t follow the argument. Some of the blue hyperlinks are dead.

nkindia profile image
nkindia in reply topvanderaa

You may be wrong about gluten. Actually, it's the other way around, gluten affects absorbtion of B12. Better to be wheat free.

pvanderaa profile image
pvanderaa in reply tonkindia

Please explain.

I said gluten and casein may have contributed to my deficiency. The fact that I had become intolerant to them was not discovered until after I was on B12 injections.

Gluten is in wheat, barley and rye. I have stopped consuming all three.

Casein is in all dairy products and so I avoid anything dairy.

nano2 profile image
nano2

Yes. Ask your Neuro for Physio. My Daughter has just started her physio Diagnosed with severe Neuro Damage of feet legs n hands, even though we asked months ago. Good Luck x

Nackapan profile image
Nackapan

In my opinion yes.

I'm covered in bruises. Not sure if eyesight . Fatigue. Can't multi task like I used to do. Get unsteady still at times after very littke effort. It happens aksi when I'm in artificial light which I can't avoid completely

fbirder profile image
fbirder

Are you sure the problems are due to B12?

Are the pins and needles improving?

Any other symptoms that are improving (or not) with B12 injections?

There are many possible causes of what you describe. Indeed, it sounds remarkably similar to me. ANd my axonal neuropathy isn't caused by a lack of B12.

palmier profile image
palmier

Yes, gait problems etc. can come from the peripheral nervous system (PNS), and peripheral neuropathy is a common symptom of b12 deficiency. The brain and spine are part of the central nervous system (CNS).

Folate seems to be good for the Schwann cells (which myelinate peripheral nerves) in peripheral nerve repair:

ncbi.nlm.nih.gov/m/pubmed/3...

Thanks for the replies. So much useful information! It's so helpful hearing about others experiences too. Best wishes to everyone. 😀

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