Brain fog

[PhilAB]

Had 2 months of 2 times per week injections but for last 8 weeks been on daily injections. I have PA and my b12 was 127 when I got loading doses. I am really worried as I don't have much physical pain but my brain fog and dizziness is non stop and I am struggling to cope. I have basically had a break down tonight crying and not wanting to go on anymore. I never get respite from brain fog. I am convinced I have brain cancer or tumours in my brain.

[Hidden]

Brain fog is horrible, I really feel for you and I’ve been there (and still there) 😕 I don’t have any advice, sorry, but I hope you feel better soon!

[PhilAB in reply to Hidden]

It is worse than all my other symptoms put together. 9 months and it still haunts my every waking moment. It is my room 101.

[wedgewood in reply to PhilAB]

Are you taking a folic acid tablet ( 400mcg) It works together with B12 , and it’s important for you to get a good supply . Do not give up . We often hear of P.A patients who feel worse before they feel better - so you must persevere . It’s very hard when you are feeling so bad , I know . Desperation sets in - but you can overcome this , . Hang on and you will get better . This forum will support you . Keep in touch .

[deniseinmilden]

Have you had your folate levels checked?

As you are getting plenty of B12, with the symptoms you describe - including the bleak feeling - it shouts classic folate deficiency to me.

While the standard maintenance dose is 400ug of folic acid you might need a much higher dose to start with to get your levels back up. If you do your Dr can prescribe 5mg tablets for you to take. These are 12.5 times stronger than the over the counter ones.

If you are on daily jabs you will probably benefit from a broad spectrum multivitamin and mineral supplement (basic supermarket A-Z ones are as good as any), plus your extra folate and maybe additional potassium, magnesium, iron and vitamin D. Ideally you will get these from your diet - by far the best as well as the safest option - but you may need to take supplements to boost your levels of these, however be guided by blood test results as you can have too much as well as too little of these.

I must run now but there's more information in my other replies - go to my profile by double clicking on my name and look under the heading "replies".

Don't panic or despair - you will get there! Please ask again whenever you need to. We're here for you!

5 years on my brain is usually pretty clear and I've got most of my memory back, despite various other problems making recovery difficult!

[wedgewood]

Do read Thrones posting of today . (Sunday) It will help you 😀👍

[PhilAB]

My bloods from May 2020

Vitamin D 227.5 nmol/L

Ferritin 53 ug/l

Magnesium 0.87 nmol/L

Folate 9.9 ug/L

Cortisol 731 nmol/L

Sodium 143 mmol/L

Have others as well.

My supplements

methyltetrahydrofolate 13 drops which is 1000mcg which is 500% NRV

Lglutamine

Hydrolyzed collagen peptides

Keto organic MCT powder

Vitamin C and Vitamin D

Antarctic krill oil

Probiotic for men 100 billion

100% magnesium glycine

Liv 52 tablets

N-acetyl cysteine

Vit b1 and garlic

Vit d and k2 daily spray

I also take b12 methylocobalamin drops in evening as well.

I inject daily (thanks wedgewood)

Mainly organic diet, sweet potatoes daily, kale daily, organic grass fed beef and chicken, organic bone broth, 2 organic bananas daily, 1 litre coconut water, no gluten in my diet.

I also take 3 tea spoons of organic black strap molasses to increase my iron.

I only drink filtered water with lemon, coconut milk and coconut water. I also have lots of coconut yogurt with strawberries. Started with cider vinegar before meals (absolutely disgusting).

I am resting as much as I can whilst my body heals.

[Litatamon]

I am so sorry Phil. We all know that place, where you are emotionally and physically tired. And openly wonder about a specific symptom healing.

First, your b12 has not increased as much as I would have thought for the time period listed. Was the May 2020 b12 227 a test right after loading?

I noticed with my brain fog, word finding, editing skills etc., well it all went away fairly quickly but then at some point it set back in again. Never at the same level of an issue but it still tires me greatly. Especially not seeing errors in my writing. I chalked it up to a tremendous amount of stress that came my way after my initial loading. Meaning my body could not heal from the b12 and deal with the stress at the same time. I look forward to being out the situation so I can truly see if it is indeed situational strain on the healing process.

Anyway, rambling - I am not a lot of help. I just simply wanted you to know that I understand Phil.

[PhilAB in reply to Litatamon]

No my level was 127 before loading doses. When the Nurse saw asked for a PA test straight away. I started loading doses a few days later then was told I had PA. I was livid as my b12 was 157 in Jan 2019 and in August 2019 was 152 but told everything great with my bloods despite many appointments listing neurological symptoms. Been so ill for so many years, it has been so hard.

[Litatamon]

Phil I was asking about your May 2020 testing results that you just posted. When you listed your b12 at 227. I was curious how soon after your loading finished did that next blood text panel come?

[Litatamon]

I understood that your reading when diagnosed was 127.

[Litatamon]

I just lost a post about understanding your frustration of having a 157 and a 152 reading way before diagnosis, with corresponding symptoms.

I would need another b12 shot to retype it! Laughing.

But yes it is beyond frustrating Phil. I hear you.

[PhilAB]

Never trust a doctor. This has turned my life upside down like so many others. I know that if I get back close to normal I will embrace life as much as I can.

[MoKayD]

Am I right in thinking you are taking magnesium glycinate? If so, when do you take it? I take this at night to help me go to sleep. It really knocks me out and can make me feel a little groggy the next morning. I don't know if this could be a problem but I thought I'd mention it.

[PhilAB in reply to MoKayD]

Thanks, i brought it to help me sleep. But, lately it has not been helping. At first I was sleeping so well when I started injections but last 2 weeks I am struggling with my sleep. And I do always feel really groggy in the morning, maybe it is the magnesium.

[MoKayD in reply to PhilAB]

I've been having periodic trouble sleeping for the past couple of years. I'm constantly experimenting with new approaches to getting sufficient sleep. I don't know if this will help you with your sleep (everyone is different) but I'll share my latest discovery with you. Vitamin B6 has really helped me get to sleep and stay asleep, with no next day grogginess.) You have to be VERY CAREFUL with B6 because too much can cause nerve damage. The recommended daily amount of B6 is something like 2 mg. The smallest dosage tablet I could find was 50 mg so I break it apart and take just a tiny portion before going to bed. So far it's been incredibly effective for me.

Hang in there. It's been two years of B12 shots for me. For the first year I had A LOT of ups and downs but it was all worth it, I feel so much better now. I still have residual neuropathy in my toes (which I doubt will ever be resolved) but other than that, life it good.