Interested to know …

[Mark2027]

I was diagnosed with PA in July SI EOD since taking all of the co factors and ensuring I get plenty of potassium. I know everyone is different but I’d be interested to hear from people with balance issues as some days I feel fine round the house but wobbly outside. Weirdly I feel better when I’m holding onto the dog lead than on my own. So far my sleep has improved immensely and my smell.

[Sleepybunny]

Hi,

I'm glad that your sleep has improved.

My balance issues improved when I got enough B12.

Do you think you are getting enough b12?

I looked into proprioception problems as b12 deficiency can cause problems with proprioception, awareness of where the body is in space.

If your balance is worse when it's dark, your eyes are closed or your view of your surroundings is blocked then may be worth looking into proprioception.

For example, I used to fall off the pavement if someone walked directly towards me and my view ahead was blocked.

Have you been referred to a neurologist?

I left a detailed reply on the thread "Recently diagnosed with pernicious anaemia" about 10 threads below yours. It might have some useful info.

There's also a pinned post "various PA/B12 D resources".

[Mark2027 in reply to Sleepybunny]

Thank you 🙏. Yes I’m under a neurologist 1st one said a condition called MSA ( she was not interested in anything B12 and I had to fight for the P A diagnosis). The 2nd opinion dismissed MSA and is still doing lots of tests as he thinks it’s not my PA but is more open to injections if it help. Tested positive for TPO antibodies as well and have vitiligo for years so all autoimmune linked.

Seems ok in the dark, although I’ll read up on that.

[Sleepybunny in reply to Mark2027]

For anyone else reading this thread MSA stands for Multiple Systems Atrophy.

NHS link about MSA

nhs.uk/conditions/multiple-...

I suspect that because B12 deficiency can have effects on every body system then it might be misdiagnosed as MSA in some cases. I'm not medically trained.

Misdiagnosis of B12 deficiency as other health conditions

b12info.com/misdiagnosis/

If you have spinal symptoms and neuro symptoms, has the neurologist assessed you for SACD, sub acute combined degeneration of the spinal cord?

I'm not saying you have this. I'm not medically trained.

I am saying that your doctors should be aware that SACD is a potential consequence of B12 deficiency especially if treatment is delayed or inadequate.

SACD can be successfully treated in some cases if found earlier enough and treated with enough B12.

The level of knowledge of the effects of B12 deficiency can be poor in some specialists (from personal experience). I mentioned SACD to one neurologist and had a very vague response. You may need to nudge them to consider this possibility if you have concerns.

Proprioception problems can be associated with SACD.

The tests below should only be carried out by a doctor at a medical centre due to risk of injury from losing balance. They should not be tried at home.

Two tests that a neurologist might use to assess proprioception are

1) Romberg test

2) Walking heel to toe with eyes closed

There are videos of these tests on Youtube.

A person with proprioception problems may be able to walk heel to toe in a straight line with eyes open without difficulty but when asked to repeat this with eyes closed risks losing balance or veering to the side.

PAS article about SACD

pernicious-anaemia-society....

Blog post by Martyn Hooper, mentions SACD.

Martyn Hooper is the former chairperson of PAS (Pernicious Anaemia Society). He retired earlier this year (2023).

martynhooper.com/2010/09/21...

There are plenty of articles about SACD online. Some of them may have details that could be upsetting.

[Nackapan]

I have been left with a vestibular disorder . Have sen 3 neurologists..busy shop ailes difficult.

Light sensitive .

Have to be careful how I turn.

I had pysio for my balance issues .

Brain retraining.

To stop the stagger walk.

Look around when walking rather than focusing on an object.

I feel better holding on to something .

Buggy

Supermarket ttrolley.

Look up Cawthorne exercises.

Go slowly .

There are eye ones too.

Too much gave me vestibular migraines.

Slopes I find hard.

All much improved but not gone .

Practically bedboubd at the start with vertigo.

Hope with pysio and enough b12 yours resolves s completely.

[Mark2027 in reply to Nackapan]

Thank you.

[charks]

My sense of smell got much better as well. I hate fish smells but over the years I thought had become tolerant of them. Not so. It was my sense of smell that got so bad. About a week after I started supplementing I noticed a nasty fish smell in the car - it was the salmon we had bought, My partner couldn't smell anything.

But my balance issues haven't resolved as well as my sense of smell. On flat ground I am fine but I have problems when going down stairs or a slope. And if I turn my head suddenly I get giddy and lose my balance.

The fact you are fine in the house makes me think your problem maybe the fact that you lack confidence outside.

[Mark2027 in reply to charks]

I think you could be right regarding confidence. I have had two falls on the stairs this year one dislocating my shoulder the 2nd breaking my wrist an elbow and dislocating my elbow so I now have plates in both .

[charks]

My partner is worried about me falling down the stairs. He has fitted a bannister on both sides and whenever I use the stairs he yells at me to make sure I hold on to both bannisters. But I tend to ignore him when I need to carry something. I should probably pay more attention to him, your falls sound horrible.

[Mark2027 in reply to charks]

Definitely 👍

[MrsTuft]

Once balance had gone it might need to be retrained with vestibular exercises.

[Narwhal10]

Hi Mark2027,

I am pleased to read you are feeling better especially sleeping and your sense of smell. Plus, the fact you are taking co-factors and potassium.

Now, as I understand your balance is far better in the comfort of your own home. However, when you change environment to the big outdoors, your fur baby is providing some stability.

One line of explanation is your home does not have a horizon. We have to orient our brains (mind) to the level of the sun, it’s glare and the shadows it casts.

In a previous post, I wrote about people who have a diagnosis of Alzheimer’s disease and Dementia may experience ‘Sundowning’.

alzheimers.org.uk/about-dem...

On Saturday, I met a photographer, they mainly took images of wildlife. I asked them whether they took photographs of Sundogs. These are optical illusions where there appears to be 3 suns in the sky. They are extremely pretty but with a befuddled brain can be confusing.

See how you feel outside by looking at the ground, so about 5 or 6 steps ahead. You are limiting the information that your brain has to interpret.

Hope this helps.

🐳

The optical illusion of 3 suns in the sky. In a snowy location.

[WIZARD6787]

My balance issues resolved with an increase of frequency of injections of B12.

Part of my issue was fluid in my eustation tubes. This was missed often when looking in my ear even by a ENT doctor.

A skilled practitioner can tell by the color of the ear drum. Humans have different levels of being able to differentiate hue, value, saturation of color. It is reasonable to assume the medicial personal I have dealt with consider themselves with a natural ability to see colors better than anyone else.

If you goggle blocked eustation tubes and glue ear and find that the symptoms match and go and ask specifically about that you might have a better chance of a diagnosis.

In the USA there is the risk of being advised to have an operation where they insert tubes in an operation when it is not needed. There is a lot online on how to treat it. youtube.com/watch?v=9SLm76j...(Not working as expected?).

I started using Pacer Pole walking sticks about 10 years ago to work on my core and posture and found that helpful in retraining my brain. They now make a handle that goes on the top of a less expensive walking stick. Again Google it.

If I am waiting in line or getting fuel in my car I work on my balance and will again practice Tia Chi as I improve.

[WiscGuy]

Balance issues can be caused by a condition common with B12 deficiency: subacute combined spinal cord degeneration (SACD). It can occur even when serum B12 is in the "normal" range. It occurs when B12 deficiency results in demyelination of, I believe, the white matter in the spinal cord. The loss of balance is due to deteriorating proprioception.