Worried about bulbar als

[Sarah0192]

Over the last 6-7 weeks I’ve been feeling lightheaded, headaches, a strange sensation in my tongue like it’s stiff and doesn’t move properly when I talk, nobody seems to think I have speech problems but I feel I’m talking different, jaw ache sometimes, muscle twitches all over, brain fog, fatigue. I have bad anxiety and I’m in such a state at the moment, all bloods are normal accept low ferritin please help

[Narwhal10]

Hi Sarah0192,Poor you. Sorry to hear you feel unwell. As nobody has replied I thought I’d write and send a gentle hug. Anxiety can be a sign of B12 deficiency. Did you ask for blood results print out ? How low was your ferritin ? Have iron tablets been prescribed.

These were my symptoms amongst other things.. I felt like I had a beefy tongue and it was too big for my mouth type of thing. I’d get words/sentences mixed up. I forgot how to pronounce certain words because I couldn’t get my ‘teeth around them.’ I’d ask my friend is that how you say ‘such and such’. I’d repeat it and it felt and sounded wrong. They didn’t notice much and tried to pass it off as everybody does this on occasions but it was a struggle.

Sending warmest wishes

[Sarah0192 in reply to Narwhal10]

Hi Thankyou for replying, my b12 is 345 the doctor said it’s in range so no issue, my ferritin level is 10 I have started taking iron tablets and the fatigue feels a little better x

[Leils]

I'd go for a coeliac test and then trial a gluten free diet

How often do you get B12?

Methyl spray can help in between times.

Also worth looking into Wahls Protocol for diet suggestions for neuro issues

(My Mum had ALS. The doctors thought I had it too but I'm a lot better now after B12 injections and a gf diet).

[Sarah0192 in reply to Leils]

Hiya I’m sorry to hear about your mum, what were your b12 levels mine are 345 and the doctor said that’s fine, I know you can have symptoms and have what’s classed as normal blood levels

[ktwing]

Sorry to hear this Sarah0192 , it sounds really difficult, especially when you don't know the cause. Definitely worth getting your B12 levels checked if you haven't already as these could definitely be symptoms, but I just wanted to point out that low ferritin can cause a lot of symptoms too - is this being addressed?

[Sarah0192 in reply to ktwing]

Hi, yes I am now taking iron tablets, my b12 is 345 and the doctor said that’s normal, it’s so frustrating trying to find answers

[Gambit62 Administrator]

with a B12 serum level of 345 it is unlikely that you are B12 deficient.Please note that although this forum has anaemia in the title it is actually about an auto-immune gastric condition that stops B12 being absorbed and leads to B12 deficiency - one symptom of which can be a specific type of anaemia in which red blood cells are rounder and larger than normal.

Your question actually seems to be more related to a potential iron deficiency.

Ferritin is generally quite a good indicator of iron status but it doesn't tell the whole story and if you had a full iron panel and that didn't indicate iron deficiency then you aren't iron deficient.

[Louwho123]

I am seeking answers as well, not an expert—but my thoughts: 1. Even if absorbing b12 you could be unable or a poor methylation (it’s genetic—MTHFR deficient ) a chemical step necessary to get the b12 into action inside the cells. This can skew blood levels higher while cells/body is still functionally deficient .

Experimentally (because gp sees levels are “normal” ) We are supplementing with good quality oral sublingual lozenges daily of the already methylated B12. “Active” Methylcobalamin

At pretty aggressive dosing. (5000mcg daily or 1000mcg 3 times a day. ).

Gp did say this would NOT be harmful, just prob not helpful, so wouldn’t prescribe shots.

Have been on this for 1.5 months now….seeing some improvements….although very slow & subjective.

I did start waking up easily in the am—never happened before.

Also night vision improving and twitching lessening a bit. Have read can take up to 6 months for neurological symptoms to improve.

-Also taking broader “active b complex—where the folate is methyl as well, that way the folic acid in all fortified foods is not hogging all the Methyl you do have

2. Ferritin. I’ve learned

This is a BIG deal. 10 is VERY low.

It will take a long time at that dose to increase if you have absorption issues.

* take tablets with 250mg vitamin C as this increases absorption & no coffee/tea with it or when ration meals—inhibits absorption as well (who knows?)

***see a hematologist—they will give iron infusion to get levels up quickly and then monitor if can maintain with oral supplements.

Please do this ASAP.

It’s worth it to me to be aggressive with these things…we may all have other things going on—& if so, will only be in a stronger position to handle them.

But what if these issues ARE the cause of the weird symptoms?? I’d like find out & it shouldn’t be an issue to get both levels up to see…

Cardiologist CRNP says she’s seen heart rhythm and blood pressure issues disappear solely from getting that ferritin level up to 60-100.

Best wishes for you.

Do what you can do for your health.

[Sarah0192 in reply to Louwho123]

Thankyou so much for replying, it really helps to hear others opinions. I’ve googled way too much and scared myself senseless, I have started taking b12 and magnesium supplements and am taking iron tabs. I will up my b12 dose and get some vitamin c and hopefully will see some improvement. Thanks again 🙂

[Sleepybunny]

Hi,

I hope you find the help and support you need soon.

"my b12 is 345 the doctor said it’s in range so no issue,"

From personal experience I can tell you it is possible to have severe b12 deficiency with an in range serum B12 result.

Most of my serum B12 results were between 300 - 500 ng/L and I had many typical B12 deficiency symptoms including neurological problems but apart from one set of 5 or 6 loading injections NHS refused to treat me as serum B12 was within range.

Some links I post may have details that could be upsetting so you may want to have someone with you when you read them.

Have you got blood test results for folate and full blood count?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

Misdiagnosis of B12 deficiency as other conditions

b12deficiency.info/misdiagn...

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.

Point 5 mentions Functional B12 Deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so patient develops symptoms of B12 deficiency.

If you're in UK, documents below may be useful to read.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic for b12 deficiency even if their B12 level is within range.

BNF Hydroxycobalamin

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

NICE CKS B12 deficiency and folate deficiency

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

cks.nice.org.uk/topics/anae...

Two useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in book is out of date. See BNF hydroxycobalamin link above.

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

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

I have written other very detailed replies with lots of B12 info which may be worth searching for.

I am not medically trained.

[Sarah0192 in reply to Sleepybunny]

Hiya Thankyou so much for the info you have provided, when you said some links could be upsetting do you mean they mention worrying diagnoses?

[Sleepybunny in reply to Sarah0192]

I was thinking of the severe symptoms that B12 deficiency can cause in some cases.

[Munchkin2021]

Can I ask did you ever resolve the tongue issue?