There is a retired doctor in Uk called Dr chandy who has campaigned for a better understanding of B12 deficiency. I spoke to him a couple of weeks ago, described my history, my poor memory and balance at that I had been reffered to MS specialist. Dr chandy is quite a religious man and seems to see it as his little god given mission to see that people get B12. He doesnt charge for consultation, relies on volunteers and tries to fund as much of the B12 as he can himself, so there are no purse strings involved like with so many alternative health ideas. He told me he does not beleive there is any MS or dementia or chronic fatigue and that it is all about getting B12, thyroid hormones and vit d right. I had my first injection of B12 last might and he advised every day for 2 weeks. I have good days sometimes but this is the best I have had for many years and I actually remmbered the name of an acquaintance. It feels as if I am waking up from a bad dream. Has anyone else tried B12?
B12 has any one been helped by it? - My MSAA Community
B12 has any one been helped by it?
Hi Hidden ! When I first went to my current Primary Care Physician several years ago, she discovered that not only was I deficient in Vitamin D but also B12. My thyroid seems fine however. I have since corrected both my Vitamin D level and B12 levels but the fatigue i feel every day hasn't diminished one bit. In fact, it has worsened over time as my other symptoms have worsened. I didn't feel any different even when my level of B12 was abnormally very high due to taking a shot every week to correct the deficiency in the beginning.
I can understand how someone without MS that is deficient in any or all of the three might feel more energized by improving them but think for people with MS, its more the disease itself that causes the fatigue not just simply vitamin and thyroid deficiencies. (Though the deficiencies could be a contributing factor.) Everyone's body is unique and each MS experience seems unique.
Dr. Chandy's heart is in the right place but I believe he is a bit misguided when it comes to fatigue and MS. Sorry just my opinion.
Thanks raingirl. It seems like you have quite a good primary care physician. I think Dr Chandy is a bit over confident that his methods are a cure all but I also think having been a nurse that it is more than possible that people are diagnosed with ms and dementia when it could be B12 and I think that while there is little else on offer it is worth a try.
How did you find out your thyroid was fine, was this by a blood test because there is a big battle going on about thyroid blood tests right now in Uk. It is not such a problem in America I gather because of wider range. In Uk 20,000 people or more treating themselves. I dont think standard TSh test has any bearing on thyriod function at all most of the time.
My thyroid function is tested via a blood test. I'm not so sure its sufficient but its not a battle I can fight right now. Too many others. I ask my doctor about it regularly because its odd to me that both my siblings, who are younger, take thyroid medication because of insufficient thyroid function but I don't.
Also...wanted to note that I continue to supplement with both D3 and B12 because if I don't, my serum levels drop like a lead balloon.
Hidden I have not tried b12 because my levels are great and I get tons of it in my diet. My thyroid is monitored to be perfect for fertility reasons and my d level is almost off the grid. I still had MS fatigue with all that lab perfection.
I'm glad it seems to be working for you, and it's very cheap in pill form!
mandyjane At the time of my diagnosis, bloodwork showed my B12 level was almost nonexistent. Even before the MRI and lumbar puncture confirmed the neurologist's opinion, she put me on daily B12, then weekly, then monthly injections. In the 7 years since diagnosis I have had pseudo exacerbations but no relapses. Does B12 help? I don't know, but it certainly hasn't hurt.
Dear Goat gal, I am on the daily injections at the moment and am really noticing that my memorys is functioning better and my head seems to be clearing but I am aware that I have felt better before and it has only lasted a short time. thanks for your imput.
Hidden i wish it were all that simple and there was a 1 thing fixes all solution. I am on b12 injections for more than a yr. while it has increased my lab levels, it has not fixed my MS (nor my trigeminal neuralgia as some also purport).
B12 deficiency can definitely cause neuro deficits but the central nervous system is extremely complicated and there are many things that can cause it to become faulty.
There's a saying in medicine known as Hickams Dictum: patients can have as many diagnoses as they damn well please
So, I hope b12 works for you. There certainly is little harm in trying 👍
I like the saying hickums dictum and how true. I think this doctor is over optimistic and on a bit of a mission but I do feel much better for his ministrations.
mandyjane From 2014-2016 I had symptoms that mimicked MS. Lesions on my spine, weakness in right arm/leg, tingling, burning feet, muscle spasms in calves, fatigue and issues with heat and humidity. In January my local neurologist proclaimed me to have MS and put me on Aubagio. While on aubagio, there were signs of a new lesion on my spine. I made a return visit to an MS specialist at Rush University. Long story short, I was told to get off the aubagio as I have a B12 deficiency. My body does not hold B12, so I will need shots for the rest of my life. My PCP and I are still trying to figure out how many times a month I need the shot. I have been on shots at different times since February, and I haven't noticed much of a difference in any of my symptoms. I still tire out, sometimes when I least expect it. Since I have lesions on my spine, and there is nerve damage, I do not think the shots will help with my issues, but hopefully there will be no new lesions or symptoms to deal with in the future. B12 shots can't hurt you, but I don't believe they will help with your MS symptoms due to the nerve damage that has already occurred. Good luck to you.
Thanks blue it does seem to be helping a bit but I agree unlikey that nerve damage will repair.
Yes many years ago but my body seemed to get used to it and it lost its effectiveness 🌹
Thank you. It sems to be helping me loads. I hope it lasts.
Me to can remember at 1st I wanted to clean the house from top to bottom and it was so good hope it stays with you ttfn
Hidden I just came across this post, I believe B12, B complex and Biotin in combination with D3 are very helpful to us. I couldn't hardly believe I was D3 deficient. Before MS, I was outside riding a bicycle all the time. Here's a couple of links about Biotin:
I think I have some biotin.I often take D3 with K2 in a spray in winter and my B12. If inNorthern hemisphere most people whodo not supplement in winter as deficient and especaiily effects those with darker skin I think. I have been deficiaent and did start to feela lot better when taking vit d.
While going through my blood work I noticed that my B levels were low and curious why my docs only seemed concerned with my D levels. I started taking more B complex a couple of weeks ago and noticed significant improvement!
Defining primary progressive MS.
One Last Time!
