Thought I was getting better but seem to be going backwards at the moment.

[Numbsew]

I seem to be experiencing worsening symptoms despite daily injections. Weakness / floppy in both hands, dropping things, (it has only been my right hand before) also more difficulty swallowing. My recent mri was clear. Could this be due to me doing too much? I have just started a phased return to work. Worked 3 hours twice this week. Also did a 40 min walk Thursday and yesterday missed afternoon nap.

[clivealive Forum Support]

Hi Numbsew personally I think you probably overdid things with the 40 minute walk especially if you felt shattered after it. I've had P.A. for 47 years and have always found it to be "self limiting" and "learned" to stop when I've had enough and I don't like to miss my afternoon naps either.

I wish you well.

[pvanderaa]

What amount of folic acid are you taking to support the B12 you are taking?

[Numbsew in reply to pvanderaa]

5mg alternate days.

[pvanderaa]

I find quite often now, I don’t realize that a symptom has stopped until something happens to set me back a bit and it returns.

Getting back to work is hard at first and as you feel better you will naturally try to do more and more. Pace yourself and realize you can’t do everything that you use to do. Hopefully you will eventually get back there again.

How much stress is involved with your work? I find stress sucks the energy right out of me. Also meetings and heavy mental activity can be very tiring. For the meetings and other things that I can plan for, I’ll take 2x 5000 mcg methyl sublinguals about thirty minutes before and these last a couple of hours.

I’ve also spread my 4.8 mg of folic acid into three doses of 2x 800 mgc that I take first thing in the morning, at noon and during my evening commute home. I find this levels things out a bit.

How much sunlight, computer monitors or fluorescent lighting do you get as part of your work?

[Numbsew in reply to pvanderaa]

Thank you for your reply.

My work is supporting troubled families with complex needs. It’s pretty emotionally draining, based in the family’s home. I also have to liaise with professionals on behalf of families and then I have to log everything on computer. It’s about 50/50 time in the office looking at a screen. Also my desk is next to a large computer hub which hums. Before I went off sick I had real trouble with both the computer screen work and on holding deep conversations with people. I was forgetting what they had said almost instantly. I had to write everything down as they said it which didn’t help build relationships. It was hopeless. I also became too dizzy to drive.

What are methyl sublinguals?

[pvanderaa in reply to Numbsew]

That short term memory loss and brain fog are the worst part of this condition.

I didn’t see if you are taking a daily multivitamin. I’m also taking another supplement called trimethylglycine (TMG) which provides a parallel pathway of processing homocysteine into methionine. I found this helped me with the brain fog.

What strength B12 injections are you taking?

I also developed an intolerance to gluten and dairy once I started on injections. It may have started earlier and led to the B12D as well. Have you tried going gluten and dairy free?

[Numbsew in reply to pvanderaa]

I’m taking 1000mg hydroxycobalamin every day. I found that with alternate day injections I yo yo good day then bad day. I seem better with daily jabs.

I have thought about going gluten free but haven’t tried it. To be honest the thought has been more than I can get my head around. I think I need to go sugar free too.

[pvanderaa in reply to Numbsew]

Before I was diagnosed with the B12D, I found that I just wanted to isolate myself from all the input and noise. I could manage with one on one but if there were other distractions, I could not ignore it.

For a while, I lost my spacial reference for sounds. I couldn’t tell where the sounds were coming from. As my neurological damage healed, I did regain my spacial referencing and I could isolate and ignore specific sounds.

You must have a lot of empathy for the people whom you support. This probably adds to your stress and drains the B12 as well.

[Numbsew in reply to pvanderaa]

The sound intolerance thing has been a problem for me too. My teenage sons noise almost drew me to tears and I just wanted to get away from him which was horrible. I love him to bits but couldn’t cope with being near his voice. 😢 Thankfully this is much improved.

[pvanderaa in reply to Numbsew]

Methyl sublinguals are B12 tablets you put under your tongue and let them melt. You get benefit as the B12 is absorbed directly into the blood stream via the blood vessels under the tongue. You may also get benefit if you still produce some IF from swallowing the B12 after it has melted.

The ones I use are 5000 mcg per tablet.

[deniseinmilden]

Pacing yourself is essential (and oh my goodness how frustrating!!) but I suspect that you may be short of something else that is limiting how well the B12 can work.

Are you taking a broad spectrum multivitamin and mineral supplement plus getting extra potassium, magnesium and iron, ideally from your diet, as well as your folic acid?

These should help but you might need to have a blood tests to see if, despite a diet rich in them, you need to take supplements too.

If you haven't already done so, I suggest you Google these to see what the effects of deficiency and excess are and what dietary sources you might like.

I need to supplement these and also use methylfolate instead of folic acid.

Extra Vitamin D may help too, ideally taken with K2 unless you are on anticoagulants.

You could try reading through some of my other replies by going to my profile by double clicking on my name and looking under the heading "replies".

If you are sure you have plenty of all your vitamins and minerals in a balance that suits you, it would then be worth ruling out other autoimmune conditions and other problems.

Above all, don't give up looking for a better quality of life and good luck.

Please ask more questions too!

[Numbsew in reply to deniseinmilden]

Thank you. I don’t take magnesium, I’ll look into it.

[Numbsew in reply to Numbsew]

I’ve just bought some magnesium glycinate 300mg. Is that the right one? I got a bit confused by all the different types available. Also. Please could you recommend a multivitamin. The choice is mind boggling. I have a fairly boggled mind to start with!

[ByGrace]

Were you experiencing the worsening of symptoms PRIOR to your phasing back to work?

[Numbsew in reply to ByGrace]

No

[ByGrace in reply to Numbsew]

Then would that make it easier to ascertain your return of symptoms are from returning to work?

[Llawry]

Are you taking b6? I found I had a bad time (symptoms returned- brain fog,etc) after taking it for a few months so I stopped for awhile, symptoms improved, now I take it only occasionally.

[Numbsew in reply to Llawry]

I do take a b complex vitamin, yes. I could try stopping that for a couple of weeks to see if it makes a difference.

[ByGrace in reply to Numbsew]

How much B6 is in your Complex B? We need a full range of B vitamines, not cherry picking this B or that B... but too much B6 can accumulate and cause worsening of symptoms...just like being B12 deficient.

[Numbsew in reply to ByGrace]

B6 5mg per tablet

[Sleepybunny in reply to Numbsew]

I think the recommended daily amount of B6 in UK is

1.4mg a day for men

1.2mg a day for women

nhs.uk/conditions/vitamins-...

[ByGrace in reply to Numbsew]

Hi Numbsew, I am sorry for the delay in answering, I had company from out of town. I was taking a different B Complex than the one I am showing you, it was 16 mg under two different B6 names and I was confused when I began my protocol so I became toxic and am recovering from that. The group I am in recommends no more than 10 mg per day and take the B complex for 4 months and then 2 months off to keep one safe from becoming toxic. Here is a link to the recommended B Complex. You could be very sensitive to B6...it was recommended to a person in the group I am in to reverse her/his useage of B Complex to go 2 months on and 4 months off ] BUT, as you are experiencing these symptoms at the return of phasing back to work... that may be the issue...and nothing else. You would have to stop the extra exercising and return to work phase to see if your symptoms settle down.

ca.iherb.com/pr/Thorne-Rese...

[Cherylclaire Forum Support]

I had to stop working for 15 months, and then a phased return, starting 1 day per week. This left me exhausted for two days afterwards, but it got better slowly. Now on 2 days a week, which are consecutive, and means I try not to do too much the next day. Unfortunately, that's a Saturday !

I think yes, you probably have overdone it. Still always worth taking deniseinmilden 's advice, and checking if you need less/ more of something.

I no longer need an afternoon nap, not even after doing a supermarket shop . It took a while to get here for me, and can still overdo it sometimes. Mostly much better.

Leave yourself some recovery gaps, Numbsew - and good news that you have started a return to work. It will get easier- take care.

[Numbsew in reply to Cherylclaire]

Thank you. It’s very encouraging to hear. How often do you inject b12?

[Cherylclaire Forum Support]

I self-inject every other day. This mainly works well for me, but I am still limited in some ways: I can't read a book now or drive; don't have that required level of concentration and my memory is appalling.

Still, I'm noticing the absence of what were once daily symptoms - back, hip and groin pain very rare now. Stiff burning feet gone too. Face pain (sinus?) also seems to be gone.

I'm quite glad that I still keep records, helps to look back at just how far I've come, and better than being disheartened about what hasn't returned .

I'm not there yet, but don't believe I'm finished with improvements.

I think you've done extraordinarily well with your phased return, and just need to allow yourself a bit of space to get used to any changes.

[jarlethblue]

I can sympathise as i got much worse before i got better. I was literally on every day or second day injections for five months before I felt a real improvement....it took a lot of time to get this ill so it will take time to get on the road to recovery. Hang in there. x. J

[Ctadds1]

I know this post is quite old but wondering how you are doing in your healing?