What neurologic symptoms did you have (or are having)?

[anon4035]

Hello, I'm new here! I'm trying to figure out if my neurologic symptoms are being caused by a b12 deficiency. I have a lot of strong indications, but I'm interested to see if anyone out there has has similar symptoms to me.

My only symptoms are a numbness/weakness on the right side of my face (cheek, corner of mouth area), and a feeling of weakness in my right upper arm. Sometimes I've felt the same numbness in my right fingers too. It's strange that it's only ever been on the right side of my body.

Background

- I had a head and neck MRI - no sign of abnormality or MS

- a previous blood test came back with a 262 b12 number

- previous rounds of b12 shots (4 shots, once a week) caused the symptoms to go away for ~ 8months. I have not had shots or regular b12 intake since then.

- I have hypothyroidism, which I just learned is strongly associated with b12 deficiency.

apjcn.nhri.org.tw/server/AP...

- I had a lot of neurologic tests (where they zap your arm, hook up nodes to your head, strength tests) which all came back negative in showing signs of measurable weakness or neural issues.

If anyone has had similar asymmetric neurologic symptoms, a feeling of weakness/numbness, paresthesia, I'd love to hear your story and circumstances. Did a specific test help you confirm for-sure that your symptoms were from b12 deficiency?

Thanks, really glad this group exists.

[wedgewood]

My Pernicious Anaemia was diagnosed by a positive Intrinsic Factor Antibody test . This test is not the best because in about 50 % of P.A. patients , the test is negative . A better test is the Schilling test , but is not obtainable in the UK now , but is in the USA .

My neuralgic symptoms were totally numb feet , which were diagnosed as “ idiopathic“ even after the diagnosis . I managed to get rid of the numbness by self injecting . My feet now just burn like hell , which is now a permanency , after 5 years .

Pernicious Anaemia is one of about 100 known autoimmune conditions . Autoimmune conditions seldom come alone , and an autoimmune Thyroid condition is the most common “ companion . Mine is Rheumatoid Arthritis .

Welcome to the forum !

P.S. our chairman and founder , Martyn Hooper , has written some excellent books about P.A. ( Amazon ),

[Nackapan]

I've not had similar symptoms but you say the symptoms went away with b12 injections ?

They are also useful for diabetic neuropathy and loads of other conditions.

If they helped have them.

Its definitely worth trying??

Or ask for an intrinsic factor test before having any?

[fbirder]

It doesn't sound like your symptoms are caused by a B12 deficiency.

Rarely are the cranial nerves affected, so the facial problems are unlikely to be B12 related. Peripheral neuropathy caused by B12 deficiency tends to be symmetrical (both left and right equally affected) and it tends to be the sensory, not motor, nerves that it attacks.

But there's only one gold standard test - and you've already done it. Do symptoms go away when treated with B12? Yours did.

So get more injections and see if the symptoms improve. If they do inject for life.

[bookish]

Hi. My neuropathy is on both sides but not symmetrical. My issues became apparent 20 years ago with right arm and hand, then both feet and left arm. Fast forward to last year when left knee went numb and left side of face and back of neck. I was then diagnosed with Small Fibre Neuropathy and may have Sjogren's contributing but also found that B12 and folate have brought back virtually all feeling in knee and most in face although neck still comes and goes. Feet burn now more than numb. Pain Management 20 years ago said that my problem was likely to be damage to small nerves but they had no way at that time to show it. Sadly they didn't tell me B12 and folate could be involved. Best wishes

[Narwhal10]

Hello anon4035,

Here’s my list

Migraines

Breathlessness

Tinnitus

Tremor

Paresthesia - numbness, tingling and pain

Weakness of legs, arms, trunk

Unsteady and abnormal gait / falls

Ataxia (Neurological disorder affecting balance, coordination and speech)

Balance problems

Difficulty walking

Dizziness (feeling faint and vertigo)

Restless legs

Forgetfulness,

intellectual deterioration

Impaired fine motor coordination

Muscular spasticity

Problems with Bladder and bowels

Disturbance in taste and smell

And I had right sided facial pain which was excruciating.

I hope you find answers and wish you well

[Bellabab in reply to Narwhal10]

Hi. I am rather surprise that you did not experience the overwhelming fatigue and profound apathy that many others report! I my case this was periodically diagnosed as depression over many years and never responded to mood stabilisers or a vast array of antidepressants.

We are all different and I am just curious.

[Narwhal10 in reply to Bellabab]

Hi Bellabab,

I’m so sorry to hear of your ill health and total mismanagement. I do hope you are on the road to recovery.

Gosh yes, I have had the neuropsychiatric symptoms as well. I have a diagnosis of bipolar and fibromyalgia. I can totally relate to the debilitating fatigue being poorly explained by depression and all those wonderful tablets (mood stabilisers, antidepressants and antipsychotics) doing absolutely nothing.

[Bellabab in reply to Narwhal10]

I am no longer depressed and believe that the depression and the bipolar disorder type two diagnoses were completely wrong. I had to take the decision to self inject every other day in February because I felt I was dying and nobody wanted to listen. These issues have severely impacted my life - not completely ruined but close. Lost my house, my wife, my career and many, many friends.

[Nackapan in reply to Bellabab]

I do hope thr injections are helping you.

[Narwhal10 in reply to Bellabab]

So sorry to hear of the impact which vitamin B12 deficiency has had on your life, Bellabab. Plus the way it has made you feel. It is very sad. I do hope that taking control of your health by self injecting is really beneficial to your physical and emotional health.

I also believe I was misdiagnosed but time will tell. Thank you for being so open and honest. Take care and keep posting.