Fiancee was diagnosed in June

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EngagedToMS
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Fiancee was diagnosed in June

Post by EngagedToMS »

Greetings! My sweet, intelligent, bella Italian fiancee was diagnosed in June last year. I guess you all understand how many questions I have! So, she is in the hospital as I write this. She was on the floor of her bathroom for hours, bleeding rectally, in pain. Her tongue has also been giving her problems. She is not giving to complaining so I do not know of any other symptoms right now. She is only 33, which seems like a prime age to be diagnosed. I guess for now I would like to ask two questions, if I may. Does her condition seem to be progressing a little faster than usual? And the second question, I have read that a B12 defiency can mimic many of the symptoms of MS and she is a vegetarian so I know she gets little B12 in her diet. Oh, and for what it's worth, her family is not only unsymapathetic, they are down CRUEL to her about her MS. I gotta get her over here! =-( Thanks in advance!
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NHE
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Re: Fiancee was diagnosed in June

Post by NHE »

Welcome to ThisIsMS,
EngagedToMS wrote:Greetings! My sweet, intelligent, bella Italian fiancee was diagnosed in June last year. I guess you all understand how many questions I have! So, she is in the hospital as I write this. She was on the floor of her bathroom for hours, bleeding rectally, in pain.
I have never read that symptom to be associated with MS. A colonoscopy may be wise to check things out to make sure that there are no polyps or cancer.
EngagedToMS wrote:I have read that a B12 defiency can mimic many of the symptoms of MS and she is a vegetarian so I know she gets little B12 in her diet.
Yes, a B12 deficiency can mimic MS including brain and spinal cord lesions. B12 is only found in animal products. A vegetarian with neurological symptoms is a prime candidate for B12 testing. This should include not only B12, but also homocysteine, methylmalonic acid (MMA) and red blood cell (RBC) folate. Homocysteine and MMA are two metabolites that can be elevated if B12 is low. Homocysteine is also cardiotoxic and can cause problems ranging from high blood pressure to stroke and heart attack when it's elevated. Be aware that the standard range for B12 used by laboratories in the US is much too broad with the lower end of the range including many people who are actually deficient for B12. The range usually runs from 200-900 pg/mL. However, it's good to at least be at 500 or higher and a person experiencing neurological symptoms will want to be around 600-1000 pg/mL. Please see the following discussion topic for more information regarding B12. http://www.thisisms.com/forum/natural-a ... 24857.html
ElliotB
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Re: Fiancee was diagnosed in June

Post by ElliotB »

Hi and welcome to TIMS.

"I guess you all understand how many questions"

This is normal. There is a wealth of knowledge on this site, on the web and in many excellent available books.

"Does her condition seem to be progressing a little faster than usual?"

There is no 'usual', every case is different.

Through diet, exercise, supplements and lifestyle change (elimination of ALL stresses from her life), there is a chance for faster recovery from an attack and less attacks.

Some of the symptoms she has may not necessarily be from MS.

Also, it is probably a good idea to have extensive blood work done, including all vitamin levels, and to have some blood work done on a regular basis.
EngagedToMS
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Re: Fiancee was diagnosed in June

Post by EngagedToMS »

Thank you both! She had the colonoscopy, no anesthetic because she is allergic to her own shadow, poor thing. And I have read about stress and MS and her family does NOT help. Like I said, her family is just plain cruel to her, which can't help. Probably good I cannot afford to go to Italy just yet! >:-(
It's funny, until I met her I never really gave MS a second thought, to be honest. Now that I am learning about it...I just don't know what to say. Except that this government needs to pull all the stops and work on what looks most promising, stem cell research.
ElliotB
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Re: Fiancee was diagnosed in June

Post by ElliotB »

I have also recently discovered fermented foods/probiotics which I feel is also helping me.

May I recommend a couple of books:

The Wahls Protocol
Grain Brain.

As far as treatment from family members, I unfortunately know this all too well. I have learned to look the other way on everything and remove myself from stressful situations the instant they begin and and stay away from people that attempt to cause stress in my life. Again, I can't emphasize enough the importance of removing all stresses from her life. I also forgot to mention in my previous post the importance of lots of sleep, including afternoon naps.
EngagedToMS
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Re: Fiancee was diagnosed in June

Post by EngagedToMS »

Funny you should mention fermented foods, I have been reading about the benefits lately and think it could do nothing but good for her, even if only a little. She only do so much to avoid stress because she has to live with her parents, which is why I want to bring her here. Thanks for confirming the fermented foods! ;-)
ElliotB
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Re: Fiancee was diagnosed in June

Post by ElliotB »

Forgot to mention that she should also consider being gluten free.

As far as fermented foods, store bought fermented foods should be avoided. Fermented foods are easy to make.
EngagedToMS
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Re: Fiancee was diagnosed in June

Post by EngagedToMS »

ElliotB wrote:Forgot to mention that she should also consider being gluten free.

As far as fermented foods, store bought fermented foods should be avoided. Fermented foods are easy to make.
Lol, like I said, she is allergic to her own shadow so OF COURSE she is allergic to gluten! =-( Absolutely, that is the only way I will do it. I scored several free ebooks registering for a website devoted to fermented foods but since I am not a shill for their site, I will spare you, unless you want it, of course!

I got an email from her today. Her latest MRI shows her lesions are advancing quickly. It is going to be very, very difficult to watch her deteriorate in the next few years. But I am telling you all nothing you don't know. I'm guessing the feeling of powerlessness is among the worst of emotions for those afflicted and for the loved ones of those with MS. So depressing...
ElliotB
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Re: Fiancee was diagnosed in June

Post by ElliotB »

Sorry to hear that she is not doing well.

What kind of diet is she following and what supplements does she take? Is she able to exercise?
EngagedToMS
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Re: Fiancee was diagnosed in June

Post by EngagedToMS »

Cheese, rice and vegetables. Because she LOVES animals she cannot bring herself to eat meat, which is frustrating because I think getting more B12 would not hurt. She used to be very athletic, now, not so much. And like I said, her useless family could care less about her (I seriously doubt they have visited her since she has been in the clinic, which cannot help her mental state). When I get her here, I will be able to lecture and hector her more! ;-)
ElliotB
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Re: Fiancee was diagnosed in June

Post by ElliotB »

Sounds like she is set in her ways, good luck!
EngagedToMS
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Re: Fiancee was diagnosed in June

Post by EngagedToMS »

Yep, she's Italian, thanks, I'll need it! :-D
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NHE
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Re: Fiancee was diagnosed in June

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Has she had B12, folate and the other tests I mentioned done? Italians are known to have a high prevalence of SNP defects in the MTHFR gene which is a key enzyme for processing dietary folate to the active methylfolate form. A deficiency in methylfolate can induce a deficiency in vitamin B12 since methylfolate is used recycle spent B12 back to the active form.
EngagedToMS
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Re: Fiancee was diagnosed in June

Post by EngagedToMS »

NHE wrote:Has she had B12, folate and the other tests I mentioned done? Italians are known to have a high prevalence of SNP defects in the MTHFR gene which is a key enzyme for processing dietary folate to the active methylfolate form. A deficiency in methylfolate can induce a deficiency in vitamin B12 since methylfolate is used recycle spent B12 back to the active form.
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Thanks for this! I was nagging her to get tested for vitamin levels but after her MRI the other day, I wonder if it is even necessary. Her lesions are advancing quickly. Plus, even with my trying to learn Italian and her speaking quite a bit of English, I'm not sure she understands what I mean. Again, with her MRI's looking bad, don't know if it would matter at this point. And her "doctors" told her they could "cure" her, which makes me want to wring their necks.
I applaud those of you that live with this everyday, and those of you that are caregivers. This is some of the most depressing stuff I've dealt with in years.
Thanks again, I look forward to reading that!
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NHE
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Re: Fiancee was diagnosed in June

Post by NHE »

EngagedToMS wrote: Again, with her MRI's looking bad, don't know if it would matter at this point.
Yes, I think testing is important. A deficiency in vitamin B12 can cause neurological symptoms that can mimic MS including lesions found via MRI. The only way to distinguish the two is to test for B12 deficiency.
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