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Help with what to ask neurologist tomorrow

Sasical profile image
9 Replies

Hello

You all very kindly helped me with my first question here the other day so I was wondering if I could ask for a bit more.

Tomorrow I have got an appointment with a neurologist. I'm going to show her my blood test results and hope that she will do something about my low b12.

I have read so much great information on here but I'm a bit overwhelmed (I'm also from Spain so English is not my first language).

Since I have an anxiety disorder and have terrible anxiety and health anxiety my two main concerns are:

- I have read that certain types of B12 can make anxiety worse.

- I have read of some people having reactions to the injections and something about it lowering potassium and that it can be dangerous.

So my question is (as if she's going to let me choose lol) which form of B12 is least likely to cause extra anxiety and allergic reactions??

Thanks in advance

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Sasical
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9 Replies
Nackapan profile image
Nackapan

Of you are in the UK hydroxocobalamin b12 is used IM .

It is given in a safe envireoment by a nurse with a doctor in the building.

I dudnt have anxiety before b12 deficient. B12 got rid of my anxiety that was bad in the beginning.

If you get injections hustle eat pottassium rich food for a while. Baked potatoes in skin. Bananas drorder fruin. Coconut water.

Let the doctor lead and prescribe.

Ask the questions then make an informed choice.

Take care

Nackapan profile image
Nackapan in reply toNackapan

Corrections:

Dried fruit

Just eat pottassium rich foods

fbirder profile image
fbirder

A few people (me included) have experienced bad side-effects with methylcobalamin, including irritability and anxiety. But it's more likely that you'll be offered cyanocobalamin which is much less likely to cause a bad reaction.

The very good news is that you do not need a doctor's prescription for cyanocobalamin injections - see this thread healthunlocked.com/pasoc/po...

If you have had macrocytic (large-cell) anaemia then you might get low potassium as the body starts to make low red cells for the first few weeks. Follow Nackapan 's advise.

Funkyfaerie profile image
Funkyfaerie

Hi Sasical,

I've been lucky and the B12 injections do not give me any adverse effects.

I will say though I saw a young neurologist who did all the bodily checks and balance checks. But when I asked her about the B12 deficiency side effects, she hadn't got a clue! I was quite shocked and dismayed, she was a doctor!!

Anyhow she scheduled me an MRI on my head and neck just to be sure, as I had tinnitus as well, and it was all clear.

Hasn't taken away much of my anxiety, I am working on that myself!

Make sure you ask all your questions, write them down, good luck and let us know how it went!

Sleepybunny profile image
Sleepybunny

Hi,

I hope you get the treatment you need soon.

Which country are you living in at the moment?

The way B12 deficiency is treated in Spain may be different to the way it is treated in UK.

What do your doctors think is causing your b12 deficiency?

Do you eat lots of food that has B12 in it eg meat, fish, dairy, eggs ?

If you eat food that has B12 in it then they may say that it is not the food you eat that is causing your low b12.

They may want to test you for problems that affect how B12 gets from your food into your blood.

B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several some stories about patients.

The next book is available in Spanish. The Spanish version of the book has the title "La Vitamina B12 "

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Lots of information with stories about patients.

If you are in UK, you may want to look at these documents which explain how B12 deficiency is diagnosed and treated in UK.

Some of the language may be quite scientific with words that you may not know.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Talks about the need to treat people who have the symptoms of B12 deficiency even if their B12 level is within range.

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

B12 deficiency can have a big effect on mental health so when you get treatment you may find that your anxiety levels improve.

You may want to take someone with you when you next visit a doctor if you feel anxious.

I am not medically trained.

Sasical profile image
Sasical

I'm here waiting for my appointment. I live in Barcelona (but my Dad was Welsh). I do eat plenty of meat and above all eggs so I doubt it's diet related. Anyway I'll soon see what she says, I'll come back and inform. THANK YOU all

Sasical profile image
Sasical

Hi there,

Well what can I say? Glad because she has written a letter for my GP to give me B12 shots, but that was only because I asked for it, she said my B12 was only marginally low at 155. She said something about them giving me folic acid in the shots too?? Even though I haven't been tested for folic acid deficiency. Would this be correct?

I asked her if my symptoms could be because of b12 deficiency and she said only the paresthesia. So I asked if the exhaustion, difficulty walking, shortness of breath etc could the be because my iron and vitamin d are low and she said "unlikely because you're in range"....but she has sent me to a neuro-muscular doc (appointment for jan 17th)....soooo, not great but at least I should be starting my b12 shots sometime soon.

Oh and the doctor asked me wether I have trouble swallowing which I do, and she asked me a lot about this, so now a bit afraid what that might mean.

Thanks once again!

Litatamon profile image
Litatamon

I just want to add that you might read a lot of negative comments about cyanocobalamin online.

But I had twenty or more symptoms disappear within loading shots, using cyanocobalamin. And I feel fine on it. I will check my gfr in a couple of months (one kidney.). As there is some talk about the very low levels of cyanide. But simply checking to cross out any concern, that's all.

The swallowing. It is listed as a rare symptom of b12 deficiency. But I had it and it disappeared during loading.

Do know that things *might* get worse before they get better. Especially early on.

All the best to you.

Litatamon profile image
Litatamon

I wouldn't give much credence to asking a gp if this symptom or that is b12.

I share symptoms with my gp mainly for other patients' well-being going forward. I sincerely don't get doctors not being open to symptoms that simply vanished with b12 shots, after years of no resolution (not to mention medically documented, found within a few minutes of research). It's bizarre and quite frankly irresponsible to be so incredulous.

Heartbreaking to think about how many lives could be changed if one's ego took a nap.

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