This topic contains 5 replies, has 1 voice, and was last updated by Dave B 7 months, 1 week ago.
July 20, 2012 at 7:20 am #2913
Dr Ben (and other readers),
Is it possible to have a concurrent Dx of Compound Heterozygous MTHFR (C677T & A1298C) as well as have Multiple Sclerosis? I have been on a long road to discovering my MTHFR in 2009 due to having a Baby with Ds, to three miscarriages and my ultimate demand to be tested for MTHFR – which was confirmed (albeit with a lot of struggle to get the testing done) in 2009. However, I have other neurological symptoms which are unrelated to my MTHFR, and believe me, I am very versed in my MTHFR diagnosis. I have read a few medical case studies which seem to support the susceptibility to MS from those who already have MTHFR. The study suggests (concludes) that 90% of those studied with MS did have MTHFR. It was a huge correlation which made me wonder if this is the reason for my long ongoing other medical symptoms.
I am curious because despite having spinal injuries that span 15 years, my chronic pains and nerve radiculopathy pains are not totally congruent with my spinal injury diagnosis of DDD (minor degenerative disc disease and sciatica as well as SI joint dysfunction) and a whole host of other MS type symptoms. I am asking my MD to consider finally officially testing for MS – but he believes that my symptoms mirror Fibromyalgia. I do not, nor do I believe that Fibromyalgia would explain the type of symptoms that I have. I have other MS markers such as hemangiomias on my spine, which were seen incidentally on my latest MRI, that was done for my lower back. And since I have been taken my MTHFR treatment regimen for the last three years, wouldn’t the symptoms that I am currently having then be symptomatic of something else – such as possibly MS?
I am definitely not a hypochondriac type person, but I have been living with these various symptoms that I realize have crossed one another for over 20 years. And while I am finally relieved to have a diagnosis for my MTHFR – there are many unanswered questions and symptoms that I feel must still be treated so that I can live a better quality of life, hopefully freer of these other debilitating symptoms.
Any ideas or suggestions? Has anyone else every been diagnosed with MTHFR AND MS?
SandiJuly 21, 2012 at 2:28 am #2932
Freddd at the methylation/glutathione treatment and therapy threads at forums.phoenixrising.me has postulated that a number of diseases such as Parkinson’s, ALS, and MS are actually a CSF/CNS deficiency of active B12 and require doses on the order of 25 mg. to penetrate into the CNS. Intracath administration is most effective. This would tie right in with the deficiencies seen in MTHFR.
I can’t give you a link to a specific thread because information is scattered all over that forum, but do a search at that website on terms such as CNS CFS B12 deficiency Parkinson’s MS and you should be able to find the details in one of the B-12 threads. Do some looking around there – there’s a wealth of information there, but it’s not organized.July 21, 2012 at 4:44 pm #2936
I was diagnosed with MS 3 yrs. ago after a bout of optic neuritis. I had a spinal tap which showed oligoclonal bands in my csf. MRI’s showed numerous scarring. I have no scars on my spine so I show no outward signs of MS. In May I tested homozygous for C677T. I had 2 miscarriages and 2 healthy children. I would never have guessed MS but had long suspected lupus as my bookshelf can attest to. I feel much healthier than I did 10 years ago following a lower carb real food diet (no gluten, low sugar, low dairy)and ldn (low dose naltrexone-not considered an MS drug). To be honest, I really doubt my MS diagnoses and feel it is tied in with the mthfr. But I also suspect that MS may have different subsets: undiagnosed chronic lime, mthfr (which I guess could be considered vascular) and pathogenic. Which could explain why some treatments work for some and others don’t. I really feel more closely tied in with APS (antiphospholipid syndrome)than MS but can’t find any studies that show it possible to have APS with oligoclonal bands only in the csf and not also in the blood.
I do have stenosis in my C6 area of the spine that gives me numbness in my hands and feet sporadically. My doctor made a bigger deal of this after seeing my spinal MRI than he did of my MS diagnoses.
I realize that we are worlds apart on symptoms and my response probably doesn’t answer any of your questions but sometimes a diagnoses still doesn’t answer your questions. There really is no definite diagnoses for MS. A spinal tap showing oligoclonal bands is considered clinical MS but there can still be doubt. My spinal tap was a mess because the doctor was in a hurry and as a result I kept dripping spinal fluid after being released-I have never experienced that much pain in my life!
Doctors usually have to rule other things out to come up with a diagnoses of MS. If you are diagnosed with MS you have to decide if immune lowering MS drugs with their questionable effectiveness are for you. I injected one for 5 mos. with obvious signs of it lowering my imunity too much. It occured to me that the same dosage was given to me a 5 ft 4″ 130 lb. woman as to a 6t. 3″ 250 lb. man. That said, I do realize the yearning for a diagnoses and the relief to know whats wrong with you. And to be honest it was a relief to no longer feel like a hypochondriac!
I do take LDN and attribute a lot of my health today to it along with a healthy diet. I have had no new plaques since diagnoses. I have had digestive troubles lately (and really since I was 16 yr’s old) that I have been trying to figure out which may be related to low stomach acid that Dr. Ben says is prevalent with us mthfr’s. And if I’ve had low stomach acid for years I probably also have an abundance of bad bacteria that have made a home in my gut. That goes along with the saying that all diseases start in the gut right? Anyway, I realize this has been a little rambling and wish you the best of luck.March 29, 2014 at 5:47 pm #381168
Hi there, after reading this amazing piece of writing i am too
glad to share my know-how here with friends.May 17, 2014 at 11:11 pm #382849
Thank you for this. My MTHFR sister has just been diagnosed with MS and it is surprisingly comforting amid the fear to know that she is not the only one.May 18, 2014 at 12:09 am #382850
I have often wondered about the link between MS and MTHFR, because my mother was diagnosed with MS in the 50’s but from what I can remember (I was a young child at the time) she made an amazing recovery after ongoing Vit B/ (Folic Acid?) injections. The doctors could never work out why she recovered
In 2011 I was diagnosed with compound heterozygous MTHFR (C677T and A1298C) which explained to me my ongoing severe health problems of 35 years. Since 2011, supplementation with active methyl folate has all but resolved all my health issues (touch wood I also have two neural tube defects which testifies to my status of genetically based folate deficiency. I got the genes from somewhere, and my guess is that they came from mum (she is not alive so cant be tested).
So yes my intuition tells me that MTHFR and MS are related in some way…. and that’s mum’s MS was resolved partly/wholly due to her Vit B /Folic Acid injections, although at the time she was not having the injections for that reason. Just dumb luck!!!