Neuroligaical symptoms : This probably... - Pernicious Anaemi...

Pernicious Anaemia Society

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Neuroligaical symptoms

jlee0614 profile image
17 Replies

This probably a stupid question but which symptoms are neurological? It scares me because I have some that are listed as nonreverseable.

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jlee0614 profile image
jlee0614
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17 Replies
Grannyweatherwax profile image
Grannyweatherwax

It depends on how long you have been without treatment and how poorly you are. List the ones you feel are non-reversible and we will start from there. :-)

jlee0614 profile image
jlee0614 in reply to Grannyweatherwax

Difficulty walking

Irritably

Memory loss

Dementia

Depression

My difficulty walking I mostly having to reset myself after I start walking, running into things and in the last couple of months I've fallen down the couple of stairs 3 times.

Memory loss/ dememtia this is the one I am most concerned about. I've found the when I'm driving at night in places I have been but not often I don't know where I am. I have forgotten certain instances. After I'm reminded about them I can piece the instances.

I have MS my Dr has ordered, blood tests and an MRI. He said he is checking to see if my MS is coming back or if I have brain tumor (like John McCain) blood clot or Alzheimer's.

The blood test showed low vitamin D

But a normal B12 but that was after two shots.

He said he doesn't think Alzheimer's because I was too organized

Thanks for your response

clivealive profile image
clivealiveForum Support

1.2 Neurological Symptoms

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.

jlee0614 profile image
jlee0614 in reply to clivealive

I have a few.

Grannyweatherwax profile image
Grannyweatherwax in reply to jlee0614

I heard of someone who was diagnosed with MS and after 35 years they realised it was B12 deficiency, NOT MS.

If you have MS then all your neurological symptoms are quite possibly down to the MS. Not necessarily B12.

Also confused as to your worries about the "irreversible damage". You will get irreversible Myelin damage due to MS?

I take it that you haven't quite been told what MS is or what to expect?

jlee0614 profile image
jlee0614 in reply to Grannyweatherwax

I know that any damage that I get from MS is permanent. I also know that in addition to MS I also have a B12 deficiencies. What I'm worried about is that I may have caused more permanent injuries to myself by not carefully managing my B12. Until I found this forum I didn't realize how serious vitamin deficiencies could be.

I really appreciate that this group takes time to educate the rest of us.

Thank you.

Curlygal profile image
Curlygal in reply to clivealive

Do you have a source for this Clive or is it from memory?

clivealive profile image
clivealiveForum Support in reply to Curlygal

Click on the link for a full description Curlygal

google.co.uk/url?sa=t&rct=j...

My list was culled from the Pernicious Anaemia Society and abbreviated.

jlee0614 profile image
jlee0614

Yes he's testing me for brain cancer, to see if my MS is showing its ugly head, blood clots and Alzheimer's, But of course I'd rather it be vitamin deficiencies

I know of vitamin b12 and D.

Lavender-Flowers profile image
Lavender-Flowers

Strangely I was just reading brainblogger.com/2014/07/30... before seeing your post. You may find it helpful

I can sadly testify to B12 def and neuro-psychiatric issues as I had 3 bouts of brief psychosis before diagnosis. I'm hoping PA society's joining Neurological Association will highlight this totally devastating side of B12 def. and the failure of psychiatric doctors to do differential diagnosis before prescribing dangerous and masking anti-psychotics while underlying condition worsens.

jlee0614 profile image
jlee0614 in reply to Lavender-Flowers

I'm going to read that article. I'm fairly concerned. I hope you are doing better now.

Gambit62 profile image
Gambit62Administrator

jlee - why did you have B12 shots in the past? was this as treatment for MS? what exactly were the results.

The normal range for serum B12 is problematic if used as a single measure before you have had shots - the shots themselves can cause reactions that mean even at high levels in serum you may not have enough B12 available in your cells so normal range really doesn't apply after you have had injections.

jlee0614 profile image
jlee0614

I have been B-12 deficient since I was a teenager. Then I only got one shot and there was no follow up. I had what my neurologist and I thought might be exacerbation of my MS. I went on Intervenous steroids and it didn't help further tests showed I was very low on B12. I gave myself a shot once a week for a month then just once a month. That was several years ago and being the noncompliant patient that I can be I stopped taking them. I started to have symptoms of B12 deficiency plus some that are not. I went my Doctor and now he is testing me for a brain tumor, a blood clot, dementia and an exacerbation of my MS. Blood test showed me deficient in D3 and normal for B12 but that was after I took 2 shots. Before I went to the doctor. I know my symptoms well enough to know I was low on B-12. What I'm worried about is if my memory issues are permanent because I have careless about my B-12 issues. Thanks for responding.

These are the symptoms from the B12 Research Institute in Rotterdam (through google translator): translate.googleusercontent...

I had full blown B12 deficient psychosis for over a year and bounced back out of it completely. Wasn't pretty. There is a doctor down in Brazil treating his MS patients with high dose Vitamin D with success of neurological symptoms. Search "Vitmamin D MS" on youtube or "The Coimbra Protocol". I wouldn't advise that without careful monitoring of blood levels and working with a doctor open to orthomolecular medicine.

This study is also positive news for those with demyelination from B12 deficiency, if you've progressed that far. I would at least try to get your minimum daily requirement of Vitamin D every day when starting B12 supplementation.

cam.ac.uk/research/news/vit...

brainblogger.com/2014/07/30...

jlee0614 profile image
jlee0614 in reply to

Thank you I feel better. I really hope you are feeling better.

Curlygal profile image
Curlygal

I hadn't heard night vision loss as a symptom before. Feel kind of relieved! Lost my night vision over a year ago and now terrified of the dark.

Clover81 profile image
Clover81

I know when mine starts getting low I can't remember fast, I have bad short term memory, a lot of mental fog, and just depression which I always have is accentuated.

I think MOST of what things like Wikipedia says are neurological effects are practically the last symptoms to appear, meaning it takes YEARS. And even then, it takes YEARS after that of not being treated to get lasting neurological defects like memory problems. Sometimes people died of Pernicious Anemia by then (in the olden days).

But even so, I went a long time before being diagnosed, I went like 2-3 years where I was exhausted by daily tasks and was practically narcoleptic with my sleeping habits, but when I got the treatment of shots, it all pretty much cleared up! I felt like a new person, or I should say, I felt like myself again.

I know this is off the topic, but it gave me great inspiration: My cat has diabetes, and she developed what they call drop-foot, where she doesn't walk on her toes anymore on the back legs. It's neurological damage from diabetes. But when my cat was diagnosed with diabetes, and we started injecting her with insulin, it reversed! Her legs began to work properly again! She now walks perfectly, and the neurological damage is reversed!

I know it's just a cat, but remember, the brain (human or otherwise) is very plastic, and can heal itself. Even heavy drug users can experience a reverse of damage in the brain, and so can people with diseases that affect the brain if they get the right treatment!

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