Neuro symptoms worsening rapidly

[sweetnessandlight]

Hi

I have been receiving b12 jabs for 5 and a half years, initially every 3 months. During the first 3 years or so of treatment the jabs seemed to restore my health apart from the last couple of weeks before it was due. Then I started to get neurological symptoms beginning with occasional numbness in hands. I persuaded my doctor to reduce the interval to 8 weeks but I soon found that the jab was making very little difference to how I felt. To cut a long story short my Neuro symptoms have snowballed. I now find it hard to walk, drive any distance, I have burning hands at night, difficulty grasping, clumsiness etc. My doctor had an e consultation with a haematologist who said that despite my MCV and MCH being above range I should only have jabs every 3 months.

2 weeks ago I started self injecting hydroxy subcutaneous every other day as I believe that is what they should have recommended.

However I am not feeling any benefit and the symptoms are getting worse. Today I had difficulty getting upstairs to the bathroom. Do I just have to be patient? Why did the symptoms change so drastically? Could there be something else as well going on?

[Gambit62 Administrator]

Unfortunately it is quite possible that there may be something else going on.

Whilst functional B12 deficiency is a possibility (lots in the blood but none getting through to cells) I would have thought that would have corrected with higher doses - though may be you need even more - I use injections as a back up and tend to rely more on nasal sprays as my symptoms come back within 24 hours of a maintenance shot.

Do you know what is going on with your folate levels - if these have fallen then you will be having problems using and processing B12.

Its also possible that something may have happened that means you are having problems methylating vitamins - ie converting folate and B12 to the forms that are used at the cell level.

[sweetnessandlight in reply to Gambit62]

Hi again

Folate levels are fine- over range in December and I am still supplementing but I see what you mean about methylation. Is there anything to be done about that? Doctor is running out of patience but has agreed to do a private referral to a neurologist. He is on the good doctors list on the fb support page so hope he knows something about b12d and can rule out any other conditions. Fingers crossed!

[Gambit62 Administrator in reply to sweetnessandlight]

mainly it affects processing of folate and there are things that can be done to try and address the problem but exactly what treatment is needed seems to be dependent on what specific genetic variations are involved.

Hope things go well with the neuro referral

[Jose651 in reply to sweetnessandlight]

Hi sweetnessandlight,

Are you supplementing with folic acid or Methylfolate?

J

[sweetnessandlight in reply to Jose651]

Folic acid.

[Allyson1 in reply to sweetnessandlight]

Are you deficient in folate? Excess folic acid may be harmful, particularly joined with b12 deficiency.

I suspect my Neuro symptoms advanced when I was low b12/high folic acid.

[fbirder]

Good to hear you've got a neurologist appointment.

I would try supplementing with methyl folate (Metafolin) just in case you do have a methylation problem.

It would also be a good idea to ask for a methylmalonic acid (MMA) test. This will indicate that heather or not your B12 is doing its job properly.

[sweetnessandlight]

Thanks for the advice. Have ordered some from amazon. Worth a try.

[deniseinmilden]

I have a similar problem and am going to see a consultant Dietician this morning about it and will post the results on here.

My only other suggestion is you might be short of potassium or magnesium or something else that is stopping the metabolism of the B12 you are taking. It makes all the difference for me, as does folate. My folate was high in the range so I didn't supplement much initially but I still got a significant response when I added lots of folic acid tablets. I take the equivalent of about 5 mg as the FB guys recommended but worked up to that level slowly.

Now to find out about methylation....!

[Sleepybunny]

Are your iron levels good?

Can't remember what you have said in previous threads but have you had recent thyroid tests? Quite a few on this forum have B12 deficiency and thyroid problems.

Have you started taking any form of new medication over past few months?

b12deficiency.info/what-are...

Are there any ingredients in the hydroxy jabs that you might be reacting to?

[sweetnessandlight in reply to Sleepybunny]

Iron/ferritin is not included in our FBC but I have been taking spatone for a long time. No new meds but I am on statins because of a heart attack just before my b12d diagnosis. Came off statins for 4 weeks to see if they were the problem and continued to deteriorate. Folate levels are very high but can only change one thing at a time. Methyl folate tablets arrive on Saturday.

[sweetnessandlight]

How much metabolism should I be taking?

[wedgewood]

What. About injecting Methylcobalamin instead of Hydroxo? A lot Of people find Methyl beneficial for neurological issues . You can get it from Arnika Apotheke in Munich(google it) You can get the dehydrated from Oxford Biosciences,but then you have To get saline to rehydrate it. I believe that B12 def organisation will send you. Some if you donate to them(they are not allowed to sell it)

[sweetnessandlight in reply to wedgewood]

Thanks Wedgwood. I am trying methylfolate at the moment but will try your suggestion next time I replenish if this doesn't work.

[Steap]

I'm following with interest as I said from the start of my crash that I thought taking a multivitamin with folic acid may have caused my neuro symptoms because the timing fit.

I'd gotten my b12 serum up on sublinguals so decided to start multivitamins again but this new one only has 200mcg of folic acid in it however after being on it four weeks my folate levels are over the reference range and my skin is burning much more.

I didn't manage to get a blood test for folate to test the theory first time round as I'd stopped the multivitamin for quite a while before any blood tests.

I don't actually know what my level is now except that is >24ng/ml as the letter from the hospital lists it under the heading "normal apart from folate >24........

There's a few articles on the net that suggest unmetabolised folic acid build up can cause nerve damage.

It's certainly an interesting one.