In B12 deficiency, dizziness/ unsteady gait/ balance problem is a major symptom. Can you describe exactly what happens to you while walking?

[nkindia]

When I start walking ( at home or out on the street) for first few minutes everything will be fine then I experience unsteadyness. Nothing spins around, I don't lose balance so much that I should feel the need to sit down. It's just that there's a swaying sensation. I don't feel confident like I used to while walking all my life. I loved going for long morning walks ( at least 8 KMS every day) and cycling ( 18 kms) This was as recent as a month ago, now I am scared. I take a very short walk, at the most a km. avoid cycling. I am 64, vegan. Started hydroxycobalamine shots. So far 7 shots every other day.

[Nackapan]

Like you i cycled .walked and went swimming. I think post menopause I stopped absorbing vitamins and minerals well. I eat a mixed diet and always eaten well.

My symptoms started with vertigo.I a year ago. I call what you describe as the stagger walk.

I'm presently trying to keep up 1/2 mile a day. Have not been swimming or cycling yet. takes a long time to get the frequency of In jections right.

Keep going with the injections. Improvements arnt made in a linear line.

I had many neurological problems. Migrains I'd never had before.

A I can say is keep going . I walk in a big circle so easier to monitor and get home.

I can't manage stairs of Hill well at all

. Make me breathless.

Make sure your folate vit D iron nd other minerals tested.

So as vegan know hope to have csn absorb b12 and other things okay. You will always need B12 supplements. Have you been tested direct PA and celiac?

I wish you well

[nkindia in reply to Nackapan]

Not tested but I don't think I have PA or celiac.

[Litatamon]

Be very grateful that you were so active. It is critical going into diagnosis. Makes it so much easier to spot the change.

I too loved walking - walked for hours. Cycled. Worked out. So it was easy to be very confident with "I know my own body. I have done this and this and that for years. Something is not right"

I at first thought I didn't get everything back from sepsis, I was grieving loved ones and my body was out of energy from caregivig, and/or my body was out of alignment from pushing a wheelchair.

So for me to answer you how it felt before diagnosis (some remain) -

*Gait change - kept saying it is like my body is out of alignment - simply suddenly felt awkward while walking. Kept verbalizing I suddenly can't walk properly

*Foot drop - once in a while I would notice one foot would not raise up the same. It became more frequent. This was huge - probable source of tripping looking back

*Foot twists at times a la feet facing in a direction/way I didn't tell it to do.

*Weak legs in general yet I had visible muscles (I didn't notice a ton of atrophy like others with b12 deficiency)

*Feeling legs/feet were heavy like cement YET at the same time feeling like they were super light in power (hard to understand/explain)

*Muscle recovery issues. Feeling like I worked out when I simply went for a walk.

*Need to take breaks all the time. Never in my life have needed a break in walking, even for hours!

*Breathlessness/sometimes sweating - when I literally would be way below my known fitness level. Once again never had this for walking ever.

*Normal speed was unattainable.

*Swaying/clumsy feeling in general.

*Tripping - looking back to see what I tripped over all the time

* Hand on banister all thr time on stairs. Suddenly had to look down to stairs for foot placement. I used to "dance" down stairs.

*Everyone would pass me on stairs and when walking. Wait! I used to be that person ?!?!?!

*And them a lack of steadiness and falls came. And that was it for me. This is not me. This isn't an alignment issue, this isn't grief, this isn't recovery. This is not me and no one can tell me otherwise. Find the issue please.

Interesting enough gait/walking seems to be showing up on my brain MRI - hyperintensities in the exact area that is responsible for gait. And leg strength, fatigue, gait issues has been one area that did not show immediate gains in my loading period. Coincidence? Who knows. It does worry me. Trying to stay positive. Walking/cycling bring me a ton of joy.

Hoping that things improve for you nkindia. Your explanation of how walking feels right now for you is exactly how I feel.

Also, I just noticed this week that I really suffer with fatigue/lack of strength/a bit unsteady in the first ten to twenty minutes. But if I sit down at that exact point for five minutes that it all improves in the rest of my walk. I never needed such a muscle warm up before this b12 deficiency.

All the best to you nkindia! Hope things improve.

[nkindia in reply to Litatamon]

You have managed to describe the malady very well. When the doctor asked me what was my problem while walking, I couldn't put it in words properly. You have stated:

Breathlessness/sometimes sweating - when I literally would be way below my known fitness level. Once again never had this for walking ever.

I am not sure about this. Have you checked your homosystine levels lately? B12 deficiency raises that and elevated levels affect the heart, but of course you must be knowing that.

[Litatamon in reply to nkindia]

No worries. It is not excessive at all. More clammy at times - I am sure it is the level of concentration I have to put into it, to try to get back to where I was before. Ego and stubbornness galore as I try to reclaim.

Plus I had my heart checked as we were trying to figure out what all these symptoms were about - before finding the vitamin b12 deficiency.

Thank you though nkindia!

Hope some of descriptions help you explain to your doctor. Gait changes, foot drop and muscle strength/recovery have been the three top explanations for my situation, regarding walking.

All the best.

[waveylines in reply to Litatamon]

Mine was a generalised increasing weakness, loss of stamina, strength, a sense of not being well cordinated -especially on stairs, loss of balance (not fully returned), Breathelessness on slopes/hills having to stop frequently, tremors and crashing for days after a short walk.

Now been on injections daily for last three months, alternate for a year, am very very slowly starting to build a bit of muscle so can now get off floor only achieved after 5 months of focused strength training. Essentially I lost a lot of muscle....have a long long way to go to rebuild it. My fatigue remains & any exercise has had to be very slowly increased to avoid crashing -frustrating!!

[nkindia in reply to waveylines]

Thank you for replying. Which injection are you taking?

[waveylines in reply to nkindia]

Hydroxocobalamin 1mg in 1ml.

I had other symptoms too which have resolved.

[littlemo76]

I was like that. Iv 4 dogs n used to bikejor with them. Walk alternate days on forrest tracks. I became unsteady. I lost concentration n would forget where i was driving to. Almost felt drunk or like dementia. I also got dizzy n had drops in blood sugar, feeling shaky n clammy. I lost all confidence walking alone in the woods. I am lot better since started SI. But im still nervous going for walks in woods myself. I also had lots of other niggling symptoms( i also have hashimotos) but together with switching to T3 im a lot better. Its a horrible feeling when you have been so active. I can totally understand how you feel. But it does get better. You are on the right rd.

[nifuarain-63]

I felt as though the pavement was uneven or slightly tilted. Also, the neuropathy in my feet made me think my shoes were too tight so I bought larger sizes which made me more apt to trip and fall. The neuropathy improved greatly within about 3 months of sublinqual b12 (I dont have PA, just a functional b12 deficiency).

[MoKayD]

For 6 months before my B12 deficiency diagnosis it felt like I was walking like the character Woody from the movie Toy Story.

[nkindia in reply to MoKayD]

Great. What was your B12 level when diagnosed? Do you take methylcobalamine sublingual tablets?

[MoKayD]

My level was at 87. Unfortunately oral B12 supplements don't work for me. I need B12 shots which I get every 3 or 4 weeks.

[nkindia in reply to MoKayD]

87 pg/ml, right? Mine was 99 pg/ml. You are getting one shot/month? Are you comfortable with the results? I am taking hydroxycobalamine every other day.

Did you have numbness in feet? Tinnitus, dizziness?

[MoKayD]

Yes 87 pg/ml. I go get my shots every three or four weeks, based on how I feel. Sometime I need a shot after three weeks, sometimes after 4 weeks. Numb toes was the symptom that diagnosed my B12 deficiency. I did have dizziness also.

[nkindia in reply to MoKayD]

If you HAD numb toes and dizziness ( meaning you don't have that now) means you had neurological symptoms. The official guide lines are to take shots on alternate days until no further improvement. Yet, it's amazing and noteworthy that you are getting back to normalcy with one shot a month.

[Midnight_Voice]

It’s worth bearing in mind that even vegans can have PA. While the usual cause of B12d in vegans is insufficient B12 in the diet, and can be treated adequately with oral B12 supplements, this could be masking true PA, which cannot then be tested for by looking at blood levels. And for the IFabnegs, even worse, and about all you can check for is a positive clinical response to injections,

But yes, gait problems. ‘Hips don’t work. Legs don’t belong’. Small wonder, when these things are being driven by the brain via the spinal cord, and the messages aren’t getting through properly any more..,,