Advice needed still heavy legs

[sbadd]

Advice needed please 5 weeks on since last loading injection and still experiencing slight tingling in bottom of feet, but more concerning is the heaviness in legs, feel like im dragging myself around some days worse than others, my doct will be retesting b12 before 3 month maintenance but dont think i can wait that long?

[clivealive Forum Support]

Hi sbadd the loading doses should have continued "until there was no further improvement" Was this how it was in your case?

If not make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even re-start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

These are the guidelines you doctor should be following.

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

Also with neurological symptoms yo are "entitled to have injections every 8 weeks rather than 12 per the latest B.N.F. guidelines. Get your doctor to look them up at:

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

Do you know what your Folate level is?

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[sbadd in reply to clivealive]

Initial reason for seeing doct was tiredness and the odd muscle twitch, i have also been on meds for underactive thyroid for around 4 years, all bloods were normal accept for b12 which is why started loading doses, heaviness in legs came while on loading doses and more pins and needles , other side effects have passed such as dizziness and foggy head but heaviness remains, folate was tested 3 weeks ago and was normal?

[clivealive Forum Support in reply to sbadd]

Having thyroid problems puts you at an elevated risk of developing a Vitamin B12 deficiency

[sbadd in reply to clivealive]

Yes i will go back to doct, thankyou for your reply

[ACritical]

There is no point to retest after you had the loading injections, your level will and should be high. If you still have neurological problems you need the loading injections to continue until there is no further improvement, then injections when necessary. In my case the heavy legs, feeling more tired, blurry vision , tinnitus, getting a bit tetchy and migraines can return as quickly as 14-21 days sometimes I can hold out a bit longer. My Neurologist put my prescription as ..when required or monthly. My new GP has decided I only need them once in 3 month, he has only seen me once, was very patronising. I have taken matters in hand and have private intramuscular injections or self inject subcutaneously. I get my 3 monthly one at the surgery. I have moved yet again and will try with this new surgery, hopefully better understanding. 🙏🏻 May I suggest you become a member of PAS, you will be able to find lots of helpful advise there.

[sbadd in reply to ACritical]

Thankyou for your reply