I nton had a blood test asked for by my consultant, as my MS quite suddenly got worse!, much worse. It came back as significantly low on B12. His words not mine.
He wrote to my GP requesting a course of B12, well I had one inj and she declined the course, get next inj in 2 weeks time. Is this normal/correct?
I am new to this site, so help please!
Rusty knife
No I would suggest it isn't . She isn't legally obliged to do the consultant's bidding , but it shows a great deal of arrogance if she doesn't . MS has often been mis- diagnosed in place of B12 deficiency / PA....... Why can't your consultant give the B12 injections ?
It's normal to get loading doses of B12 ie 6 injections in 2 weeks ,then 1 injection every 3 months or if any neurological problems, 1 every 2 months . For many people it's not sufficient . That's when they have to resort to self injection .I have to its simple enough If you ever need any info on that subject come back to this forum . Wishing you all the best !
hello Rusty -
it is, unfortunately very common but that certainly doesn't make it correct.
There is a huge overlap between the symptoms of MS and B12 deficiency so the reason the symptoms may have been getting worse may be that you now have a significant B12 deficiency on top of the MS rather than the MS getting worse.
Suggest that you
a) get a copy of the results so you know exactly what the figures (and ranges) were.
b) read through the pinned posts and in particularly look for the materials that fbirder put together
c) ask your GP outright why she is going against the medical advice of your consultant?
d) join the PAS proper as they can provide some direct support - depending on your level of membership and do have medically trained staff that you can talk to
pernicious-anaemia-society....
e) if your GP can't give you a convincing and compelling reason for their refusal to follow the advice of your consultant and won't listen to references that you might pass to her based on the materials in the pinned posts, see if you can find another GP who will follow the advice of your consultant and is prepared to work with you properly as a patient.
you could also consider making a formal complaint about the (lack of) treatment that you are receiving.
RETHINK MS
For 7
years I was experiencing off and on, hands and feet tingling, burning, pain, difficulty walking, extreme fatigue and depression. Countless visits to the ER and Dr. Office,checking for everything but B12. It then started where I had extreme difficulty getting dressed, had trouble feeding myself, could not write or hold a pen. Bending my neck sent electric shocks thru my body. Went to the hospital for MS testing. MRI, spinal tap,Lyme,brain scan. After more testing, one Dr. checked my B12 level, it was 80. I spent 10 days in the u and 10 days in rehab. They were not sure if I would recover. U untreated, B12 deficiency can cause permanent brain damage. I was lucky, everything reversed. Maybe if B12 methylcobalamin supplements were given early on, we might be able to prevent MS and other brain and nerve related diseases.
If that one Dr. didn't check my B12 level,I would have been diagnosed with MS, because the symptoms are the same.
B12 is vital for our health. It helps make DNA & RNA, your red blood cells.
Helps with Depression,Dementia,Sleep Disorders.
Protects &a rebuilds the Myelin sheath covering your nerve fibers.
Slows brain shrinkage up to 80%.
Lowers Homocysteine levels associated with heart disease.
If low levels are left unchecked, brain damage will occur and can become permanent.
Helps with age related macular degeneration.
By supplementing with sublingual Methylcobalmin B12 around 40 or 50 years of age, we could help prevent problems before they start.
Everyone should supplement and maintain blood levels of B12 in the range from 600 to 2000 pg/ml in order to avoid and, if this is the case, help recover from the wide range of problems that result from B12 deficiency or insufficiency. Health care practitioners: this is the first thing you should check for every patient that comes in, independently of their age or condition
Methylcobalamin: This is the neurologically active form of B12. It is technically a `coenzyme` of vitamin B12 and it is almost never prescribed by doctors despite being effective, readily available and inexpensive. It is also available in an injectable form. Degenerative neurological conditions are where methylcobalamin shows its greatest benefits over other cobalamin preparations. Brilliant news for MS’ers! Not only has Methylcobalamin been shown to work in neurologic diseases, it also helps with
the elimination of toxic substances in
the body.
Methylcobalamin: This is the neurologically active form of B12. It is technically a `coenzyme` of vitamin B12 and it is almost never prescribed by doctors despite being effective, readily available and inexpensive. It is also available in an injectable form.
Methylcobalamin is an active form of B12. It is not prescribed by doctors (and not licensed for use in the UK) because hydroxocobalamin is more stable, tends to be cheaper and easier to obtain and - most importantly - is converted to the two active forms of B12 in the cell.
Indeed, the first thing that happens to methylcobalamin when it enters the cell is that the methyl group gets removed. (If that didn't happen then shooting methyl would result in a lack of adenosylcobalamin). Hydroxocobalamin undergoes the same process, removal of the hydroxo group, to give exactly the same product.
Certain methyl evangelists like to try and persuade people that methyl is, somehow, magic. Strangely, these people sell books, snake oil or web advertising space based on magic methyl.
"Everyone should supplement and maintain blood levels of B12 in the range from 600 to 2000 pg/ml" ? and that's based on what?
"Not only has Methylcobalamin been shown to work in neurologic diseases, it also helps with
the elimination of toxic substances in the body" ...actually, that's hydro that does that, not methyl.
Bittersweet Bonds - Pernicious Anemia and the Doctor-Patient Dance
How does it feel to have too much B12?
seeing neurologist, advice on b12 injections welcomed…
