I posted here a few months ago when I thought my symptoms MIGHT be caused by a b12 deficiency but I was wrong ~ after many tests, examinations, scans etc & finally being listened to I finally had a diagnosis... I have MS which is absolutely S&$T but I still have some questions regarding b12 which I was hoping someone here may have answers to or help with !?....
My b12 level has always been high but from what I have read the majority of people with MS are deficient... So why is my soooooo high (without supplements)?....
I read that the supplements recommended for MS include b12 so will it be safe for me to take a sublingual b12 in the hope that it may help with my myelin sheath!? (even if my levels are high anyway)
And last question I can think of for now ~~~~~ When it becomes available I will get the test to test for active b12 but if I take the sublingual b12 will this still give me an accurate results? (am confused by this)...
Many thanks xxx
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CazzyP
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It interested to pursue it further, please let me know for I have since January 13 when I joined the PA group compiled through Internet research close to 200 sites, several of which are about the myelin sheath condition, common in many diseases. I will be happy to share a few more.
Also, if able to locate, member "hopes", also from Ontario, recently contributed material about MS and the "folate trap", connected to B12. At the bottom right of this page the last question I posed is also connected to the folate levels, to the right of my kitty on the patio door.
Hi CazzyP If you are worried about your Holotranscobalamin levels or Active B12 as it is known, then may I suggest that you contact Denise O'Blein at Guys / St Thomas's Hospital in London on 0207 188 7188. Denise will send you a package by post, in which you can return a blood or serum sample to London in. This sample can be taken by your local GP and then must be returned to Guys within 16 hours, or the the serum can be separated and frozen, in which case you have 3 days to get it to them. Dr. Dominic Harrington as Director of Medical research, has a team of top scientists working on these problems, these guys will be able to carry out the test for you and answer all your questions. The cost is £12 for the post paid package and £ 18.00 for the Active B12 testing. Give Denise a call, she will explain the process to you and you could have your answers within the next 10 days. THEN! you will be sure of the true facts.
Good luck, hope you find what you are looking for.
Hi I am new to this, but I have rung Denise O'Blein at St.Thomas's and she advised that I needed a letter from my GP to get the active B12. My gp refused to help with this test, and today after having a blood test last week and my B12 being 1400, he has now refused anymore injections
That's true and your not on your own with this problem, it appears most GP's take that line, ask your GP to refer you to your local Haemotology Consultant he/she is perhaps more likely to understand and help you get a referral letter from him or her. Good luck with that, it has worked for me.
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