Still on 2-a-week - how long does it takes to get brain back?

[Cherylclaire]

I know I'm getting better because:

people keep saying I look better, my hair rarely falls out now, my mouth rarely splits at the corners or bleeds, and my gums don't bleed either, I can feel the injection needle going in now (since Christmas) and feel tingling sometimes instead of numbness in hands and legs.

But still can't:

follow a series on TV (memory loss) or a complicated plot (confusion), or remember more than 1 thing at a time unless I write it down and then remember I've written it down, do anything the slightest bit physical without losing my temper and then wearing myself out (adrenalin surge??).

Still have hip pain, lower back pain, go to the toilet way too often. Last night I woke in the middle of the night in darkness and could not remember where the stairs were in the flat I've lived in for 35 years -because I'd spent the weekend before at my partner's!

Often I am unsure whether I am continuing to improve or just setting my sights a lot lower. I have been doing a chart for months but can see no real patterns emerging at all. No-one seems to know much about long-term treatment for Functional B12 deficiency, and I still get confused with American advice because they don't seem to differentiate between vegetarians and vegans. I've been a vegetarian for over 30 years so should be dead at least twice by now (?) - but I eat cheese and/or eggs and leafy greens every day, and doubt that meat-eaters eat that much liver these days..... anyone out there know what I can do to help myself?

[Lakme_]

Probably depends on how long you've been on it. From what I understand physical symptoms recover completely before neurological symptoms do. It'll probably take a month or two before your back in shape. I also made the terrible mistake of trying to go vegetarian because I thought my meat eating was the thing making me sick. Terrible idea. Just tough it out and your concentration will slowly come back over time. If it persists, you might want to talk to your doc about a solution.

[Cherylclaire Forum Support in reply to Lakme_]

First B12 loading after blood test started end of Feb. 2016: 6 in 1 month then 1 every 3 months....... got very much worse by 2nd 3-month one , blood test 2000+ and MMA high at 351 so diagnosed with Functional B12 deficiency and have had 2 injections a week since 6th Oct 2016. Just off for one now.

Gave up eating meat or fish long ago, but I can get why you may have believed the problem was what you were eating. I often feel that my body is rejecting anything I feed it, as if it is frustrated and disappointed with my attempted solutions!

[Lakme_ in reply to Cherylclaire]

Ahh you must have been experiencing symptoms much longer than I have. If it's been about a year I wouldn't know what to tell you. My doctor put me on antidepressants when I began experiencing symptoms and about everything was corrected besides this vague lack of enjoyment of things. You should talk to your doctor about the memory problems. Mine got better after I started taking supplements and injections but I'd only been experiencing symptoms for about a year before I found out what was wrong with me. I highly doubt that the b12 injections are causing your problems. From what I understand Folic Acid helps with your b12 absorption so you may want to check on that. I'm also only 20 years old so you're probably a lot older than me. 30 years sounds like a long time to be dealing with this before diagnosis. My hair was never falling out or anything like that. Sounds like it might also have something to do with your thyroid, but don't take my word for it. Hope you get better.

[Cherylclaire Forum Support in reply to Lakme_]

I am getting better. B12 injections are certainly improving things outwardly, and folate and ferritin 3-month course brought my levels up, Lakme, also had thyroid checked -some of my family have overactive thyroid problems- but that was fine.

You're right, I am a lot older than you: I'm 58. That must sound like dust to you! Maybe I didn't explain very well: I've been a (problem-free) vegetarian for over 30 years- mainly a very fit and healthy one, who rarely went to the Dr. I don't believe that my problems stem from my diet at all. Other than that, I don't have a clue really.

Are you still having B12 injections regularly? Are you still taking antidepressants? You being only 20 and having a 'vague lack of enjoyment of things' : maybe you haven't yet found the things that make you happy yet? Here's hoping that 2017 drops them right in your lap!

[clivealive Forum Support]

Hi Cherylclaire I've had P.A. for 45 years and it's still very much a case of:

To my deafness I'm accustomed

And my dentures are just fine

I can cope with my bi-focals

But how I miss my mind.

Seriously though do you have any other problems which may be affecting your ability to absorb B12 and Folate from your food?

I am not a medically qualified person but hopefully someone else on here will be able to give you good advice and I wish you well

[Cherylclaire Forum Support in reply to clivealive]

Clivealive - your mind seems fine to me, also like it that you've taken to poetry and displaying artworks too. Spring must be just around the corner!

I have just finished a 3-month course of ferritin and folate, and results seem good. Over the last 2 yrs I've had about 5 blood tests: FBCs and additionals (kidney, liver, thyroid etc), been to the bowel people, seen 2 gastroenterologists (neither of whom were one bit interested), x-ray & MRI & physio for back/hip, and dietician for suspected IBS (-it wasn't, but always willing to try, I did the FODMAP diet anyway)- and the only thing I ever turned down was Amytriptyline: once offered for back/hip pain, twice for 'depression' (..wouldn't be so surprising, would it?)

IF there turns out to be no specific professional guidance for the long-term treatment of Functional B12 deficiency, which I think is true, what can a Dr do? They are answerable. I have tried to steer her towards advice from those who have survived long-term functional deficiency, but she can't act on this because she would not be able to justify actions to superiors: bit Catch-22

[Hidden]

Hi Cherylclaire You may need to check your vit D and supporting vitamins. Your blood levels are important and any relevant antibodies. Refer to drgominak for a very good explanation. Finally you may need to check your absorbtion of diet. I have recoverd from the fatigue but not from the brain problems yet...

[Cherylclaire Forum Support in reply to Hidden]

Still tired, but less tired and sometimes a short afternoon rest is enough, rather than 2-3 hours of immediate sleep.

Just got latest blood results back: FBCs always okay anyway, ferritin and folate were on the low end of scale, but now sorted. Vit. D at high end of scale and everything else I've had checked is close to middle range (except of course B12 levels off the scale and no longer of relevance and MMA high). Had autoantibody levels checked, gastric parietal etc all negative & no action needed.

Hope your brain mends soon! Seems to take a while, doesn't it?

[Gambit62 Administrator]

Actually if you have a functional deficiency then shots twice a week still may not be enough.

Whilst it isn't clear what causes a functional deficiency and there really isn't much about treating it out there - the trick does seem to be keeping your levels in blood so high that enough gets through to beat the blockage - I think of it as being like trying to get water down-stream of a huge dam - when all you can do is have water trickling over the top of the dam.

I didn't start to get better until I was on doses that are greater than 1 injection a day - and if you look at the polls you will see that there were a number of respondents who said that they actually needed injections more than once a day.

[Cherylclaire Forum Support]

Hi Gambit, as you can see, it's still very good day/ bad day with me, so I think you are right about more=more.

My reluctance to go down the SI route appears to be pure stubbornness and a belief (possibly misguided) that my good doctor will come to the end of alternative possibilities for my uncleared symptoms and accept it's all part of the same problem. We have both come a long way, and eliminated any of the usual suspects with various blood tests and bowel tests, and 3-month course of folate and ferritin just completed.

This is also the FIRST time that the nurses have had to treat outside of their 3-monthly comfort zone...which must mean an awful lot of patients are self-injecting, I guess. Can't see them going any further than 2 a week really, and Dr is keen to start what she sees as maintenance treatment of 1 a month. I refused- until either I've seen a neurologist (still waiting for a date) or she's spoken to the elusive B12 expert at St. Thomas's -and they agree with this course of action. So here's hoping they don't, or I really am stuffed!

Time for some good news: folate now more than 20ug/L (from 5.5) and ferritin now 62.1ug/L (from 46.3).

Best of all- the injection yesterday? IT STUNG!! Not much, granted, but at least now I know what everybody's been talking about. Made me feel a little more 'normal'- relatively speaking!

[jade_s]

Hi Cherylclaire, I've had brain fog for yeeeears. It took me about 2.5 months of injecting daily 1mg to starting seeing some improvement in my ability to think clearly and focus. Skipping a day would result in a return of my balance and coordination issues (my 'early warning' symptoms). I did 2mg for several weeks and now I've settled on 1.5mg daily. Hoping I can go to weekly and then monthly soon, eventually.... but at the moment I couldn't survive on just 2 or 3 a week. The brain fog started to resolve at around the same time the tingling in my hands was nearly gone. Hope you get some relief soon!

[Cherylclaire Forum Support]

Do you know what, Jade? I've never had any balance or coordination issues at all, despite numbness and pins and needles in feet. I'm lucky in that my early warnings are my hair falling out when I wash/brush it, bleeding gums and splits at corners of mouth: very visible but without the struggle/ inconvenience of balance issues. Quite rare these days, -so just left with moody, impatient, grumpy, solitary, sensory overload, memory loss, losing track, cognitive difficulties- quite a catch, don't you think?

Interesting that you are aiming for weekly and then monthly... is that achievable as a goal? I really hope so. Wish you all the best.