Ms incidence in non related partners
Ms incidence in non related partners
Does anyone.know how common.it is for either married or long term living together couples to both be diagnosed with MS? Mypartner and I had been living.together for about 17 years when he was diagnosed aged 42, three years later, I too was diagnosed at the same age. I still havent come to terms with how this can happen and feel that we have either both been exposed to an environmental toxin or both had the same illness and this has caused it. We know of no other family members with MS or any similar neurological disease. Is there anyone else out there like us? I would.love to hear from you
Re: Ms incidence in non related partners
i firmly believe that ms has a major and generally unrecognized environmental component. within the last week i saw, for the first time, a published study which described ms as "probably autoimmune". given this view, it makes complete sense to me that a couple with no family history of ms could arrive at the same dx. others, who view ms as infectious (in this scenario i personally view the susceptibility to infection as environmental as well) would likely agree. by environmental i personally mean nutritional. i always recommend that visitors with or without a dx review their day to day nutritional habits for compliance with public health recommendations. beyond that, there are a few key blood tests to consider. have the docs requisitioned any nutritional bloodwork for either of you so far? if so can you share results?
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Re: Ms incidence in non related partners
No nutritional blood tests have been done that I recall. We find it hard to get them to do anything. GP has done standard blood tests and tested vit d levels, we both take supplements now. The only thing I remember that we thought was odd was that we both had raised white cells but we were both.told separately that this wasn't a problem
Re: Ms incidence in non related partners
OK where are you located? options (and costs) for testing will vary accordingly. they definitely should have tested serum cobalamin (b12). do you have or can you access copies of your results? what is your d3 regimen specifically? you can analyze your own diets for free just takes some time and effort
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Re: Ms incidence in non related partners
Hi. I am in the UK. I think B12 was tested around the time of diagnosis and was in the nirmal range. Sorry to be so vague. I dont have any copies of blood results and not sure I could get them if I tried
Re: Ms incidence in non related partners
dang i hit a wrong key and lost my post somehow.
short version uk private testing seems to be $$$
normal is pretty bogus. a bell curve, that is all. you can be at the extreme left end of the left tail and still be 'normal'. kind of like how you can graduate at the bottom of the class in med school and ppl still call you 'doctor' ;) anyway aim for at least 500 pg/ml (370 pmol/l) serum b12.
if your d3 regimen does not involve any cofactors, be careful. i ran into serious trouble taking 4000 IU per day for a few years running. my doc had no clue what the problem was. had me tested for GERD and gave me nexium. couldn't have been much worse where required cofactors are concerned. it was a randomly encountered pharmacist that set me straight.
there are a few other nutrients to consider. if you read through user zyklon's posts there's a lot of related detail there posted over an amazingly short time frame. dude has access.
short version uk private testing seems to be $$$
normal is pretty bogus. a bell curve, that is all. you can be at the extreme left end of the left tail and still be 'normal'. kind of like how you can graduate at the bottom of the class in med school and ppl still call you 'doctor' ;) anyway aim for at least 500 pg/ml (370 pmol/l) serum b12.
if your d3 regimen does not involve any cofactors, be careful. i ran into serious trouble taking 4000 IU per day for a few years running. my doc had no clue what the problem was. had me tested for GERD and gave me nexium. couldn't have been much worse where required cofactors are concerned. it was a randomly encountered pharmacist that set me straight.
there are a few other nutrients to consider. if you read through user zyklon's posts there's a lot of related detail there posted over an amazingly short time frame. dude has access.
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Re: Ms incidence in non related partners
Hi. Yes I know what you mean. In the UK so called "normal" readings seem to cover a massive range. I know my blood ferritin was considered normal at 10, in a range that went from 10 to 150! Thanks for your info, I will.see what I can get retested on my next appointment. I get my vit d measured twice yearly and I do worry about taking it in large doses.
Re: Ms incidence in non related partners
ferritin 10, wow! i believe the sweet spot for that one (ie the range least associated with health risk) is between 80 and 100. i feel like i need to go have a dig in that literature again, see if there are any updates since arriving at that conclusion.
have you been supplementing iron? if so and if long term, that can have unintended consequences.
good that you're measuring d twice a year. are your levels up over 100 nmol/l? i tend to aim a bit higher than that as the ultimate goal, but 100 with proper attention to cofactors is a good first step.
have you been supplementing iron? if so and if long term, that can have unintended consequences.
good that you're measuring d twice a year. are your levels up over 100 nmol/l? i tend to aim a bit higher than that as the ultimate goal, but 100 with proper attention to cofactors is a good first step.
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Re: Ms incidence in non related partners
Yes.my vit d was 140 at last test. I am also taking daily iron supp. With them my hb is 12 now and ferritin has gone up from less than 1!
Re: Ms incidence in non related partners
Welcome to ThisIsMS. Have you been tested for any infectious agents such as Lyme or Bartonella?96Wgrsc wrote:Does anyone.know how common.it is for either married or long term living together couples to both be diagnosed with MS? Mypartner and I had been living.together for about 17 years when he was diagnosed aged 42, three years later, I too was diagnosed at the same age. I still havent come to terms with how this can happen and feel that we have either both been exposed to an environmental toxin or both had the same illness and this has caused it. We know of no other family members with MS or any similar neurological disease. Is there anyone else out there like us? I would.love to hear from you
Of course, there are other things to consider as well. For example, if you share a common diet such as a vegetarian or vegan diet, then it might be possible that you're both B12 deficient. Yes, you can be B12 deficient and still test "normal." One medical group in my area run by a major research university has a laboratory range for B12 that runs all the way down to 180 pg/mL! This is criminal.
Re: Ms incidence in non related partners
Hi, thanks. We were both tested negative for lyme, I dont know about the other one, I cant remember having beard of that. Neither of us are vegan or veggie but we dont eat alot of red meat. He is better at sticking to diets than I am. He did paleo for a while and limits sat fat and avoids dairy at the moment
Re: Ms incidence in non related partners
ok 13 is the target for hemoglobin. but daily iron will affect zinc status. zinc is a concern for ms patients. supplementing iron suppresses zinc and vice versa. best to understand status on both. the levels still come up, albeit more slowly, when both are supplemented. they come up faster when just one is supplemented, but it's at the expense of the other.
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Re: Ms incidence in non related partners
I find.it.so.hard to keep up with all of this, I fear I may be doing more harm than good!
Re: Ms incidence in non related partners
it's a process. basically the public health recommendations for diet will do you no harm. food is the number one safest source. eating nutrient dense sources of iron and zinc doesn't incur the issues that are established for supplements. i really struggle with this personally, but clam and oyster chowder once a week will look after iron and zinc needs respectively.
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Re: Ms incidence in non related partners
I get that. Thanks.