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Doctor Ordered Mri Of Brain


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#31 rock on!

 
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Posted 17 August 2008 - 08:45 PM

Hi Shay,

I am very interested in B12 as my husband was diagnosed with a B12 deficiency about 10 years ago & has been doing injections of cyanocobolamin every 2 weeks or so ever since. He can tell when he needs it...it took about a year of his horrible headaches & dizziness to recede. About 4 years ago he developed psoriatic arthritis & we believe he is has either a serious gluten sensitivity or celiac (my husband's blood tests were negative, but he has so many symptoms & his nephew has severe celiac ). Have been on a gluten free diet for 10 months now.
ANYhow, what I really wanted to ask you was...

What does this excerpt from what you wrote mean?

There is no "loading" effect contrary to common belief. The "loading" protocol might keep PA folks on the edge for years but it won't allow neural healing or toxin protection


Are PA folks psoriatic arthritis folks?
What do you mean by "the edge"? Of health? And where did the tie to PA come in (if, in fact, you meant psoriatic arthritis)?

Thanks.
And thanks to all of you for creating this thread because my husband's brother (the father of the nephew with celiac) has been both diagnosed with MS & also, undiagnosed with MS because of spots on his brain which ended up disappearing once his severe neuropathy slowly dissolved. We are trying to convince him to both go gluten free & start taking B12.

Best~
RO
  • 0
never dx Celiac
dx IBS whole life
gluten free 9/12/07

husband:
blood test results negative
dx psoriatic arthritis 2005
psoriasis since childhood
gluten free 9/14/07

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#32 darlindeb25

 
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Posted 18 August 2008 - 02:05 AM

http://www.medicinen...mia/article.htm PA is pernicious anemia, a severe B12 deficiency. Not everyone with a B12 deficiency has PA. Here is another good site: http://www.yourhealt...itamin_B12.html

Depending on which doctor you talk with, taking extra B12 may or may not be beneficial. My PCP says he feels taking B12 just gives you "rich" urine, but, he then says he has many patients who swear by the difference in their life from taking B12, so he says there may be something to it and he has no problems with me taking B12, or even asking for B12 shots. Doctors will tell you your B12 is fine as long as it falls within the "normal range" status. Yet, a person who has a level of 200 actually has a level that is too low. "Normal ranges" may be normal for one person, and way out of line for another.

I never had my level checked before I started taking B12, so now, I will never know what it was. I have not had B12 shots, so I am not sure what the type of B12 is for those. Taken orally, B12 should always be methycobalamin, our bodies can not process cynacobalamin nearly as well. I started out with 1000mcg and one year later, my level was at 1237, now I take 3000mcg and my level recently was 1013. I too can tell when my B12 is low, my neuropathy flares.

My neuro told me there is now a nasal spray B12 that works very well. He says the method I take B12 is up to me, no one method is better than another. He is a very highly respected neurologist, top in his field.

I hope some of this has helped you.
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#33 ShayFL

 
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Posted 18 August 2008 - 04:12 AM

RO,

I am not a medical doctor. I do have a Phd in Holistic Nutrition. But I acknowledge my limitations. I am a researcher by nature and I recommend that you do your own research with regard to anything I say. :)

But I interpret that quote to mean (for those with PA) that taking a massive amount of B12 early in treatment and then taking smaller amounts at periodic intervals will not heal the neuro symptoms. As your husband has discovered on his own. He has to take the shots on a consistent basis now for 10 years.

For those with moderate to severe neuro symptoms, "front loading" a massive amount of B12 and then taking a smaller amount once a month may not "heal" them. They need it consistently (like your husband).

Incidentally, I skipped my B12 for 2 days to see what would happen. Neuropathy got worse. I think I am building on a major deficit. So I am sticking with the original plan of 25000 or so a day (sublingually and transdermally) for 6 weeks. Will reassess then.

My Doctor works with me. She is a Holistic MD in Brandon FL. Not hard to find her online. She knows my education and background and allows me a lot of "experimentation" with her blessings. She, like me, recognizes that the human body is so very complex that not one person can know it all. She is open to learning from her patients. I love that about her. I could go tomorrow and ask for B12 shots, but I tend to be pretty self sufficient. Going to her only when absolutely necessary.

If my experiment works over the next 6 weeks, then it might just be more convenient for me to get her to Rx the shots so I can give them to myself at home every 2 weeks.
  • 0
GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

#34 rock on!

 
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Posted 18 August 2008 - 08:31 AM

thanks for the reply. And, yes, I agree...everyone should do their own research. I constantly do! But, I am so appreciative of all you who do as well & share your findings...whether they be articles or personal experiences.

Now I get it. My husband did "front load" at the very beginning. He took injections daily for a long period of time. Then went to the every 2 weeks. His doctor had told him that he should then go to once a month. But, when he did, his symptoms returned & he made the decision on his own to do the injections every 2 weeks.

This is all very interesting. When he was tested for B12, they almost missed it as his levels of B12 were in the low of normal range. But, his methylmelonic acid levels were sky high. That's what tipped his doctor off. Thank goodness!! Unfortunately, we were so elated that a solution to this was presented that we didn't even question WHY his levels were so off. Perhaps that would've led to a gluten discovery sooner....however, I guess that was 10 years ago & all the info I'm privy to now wouldn't have been available.

Does anyone have knowledge of injectable B12? I'm just wondering if perhaps cyanocobalamin is not the best injectable.

Thanks again!!!

RO
  • 0
never dx Celiac
dx IBS whole life
gluten free 9/12/07

husband:
blood test results negative
dx psoriatic arthritis 2005
psoriasis since childhood
gluten free 9/14/07

#35 ShayFL

 
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Posted 18 August 2008 - 09:22 AM

Most people have reported greater improvement with: hydroxocobalamin injections
  • 0
GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

#36 Di_gfree

 
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Posted 04 September 2008 - 04:30 AM

If you don't mind me asking, how did the MRI go?
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Diagnosed Celiac via biopsy '97/Gluten Free ever since
Diagnosed Hashimoto's 04/08

#37 Judyin Philly

 
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Posted 04 September 2008 - 05:56 AM

If you don't mind me asking, how did the MRI go?


ditto
My Mississippi
I'm anxious to hear what they found also as i have bright objects from my MRI too
Judy
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#38 MyMississippi

 
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Posted 04 September 2008 - 09:41 AM

Hi All,

Well, I was all ready and pscyhed up to go for the MRI and they called me early that morn to cancel it due to Tropical Storm Fay. :o


Of course this gave me more time to research brain MRI------ Bad idea ! :P and now I'm working up my courage to reschedule----- :D


I'll keep you posted----- :)
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CeeCee

Allergic to: wheat, peanuts and Penicillin
1995 severe anaphylactic reaction to Wheat

Gluten free since Sept. 2006


"Failure is only the opportunity to begin again, more intelligently"--- Henry Ford

#39 Chrissyb

 
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Posted 17 September 2008 - 08:47 AM

"The majority of people who get an MRI show nothing. And keep in mind that MS is really a syndrome and MANY people who are dx MS later show no signs of the disease once they go on a gluten free diet and/or clear up their candida. Some also go into complete remisssion on the Swank diet."

Shay I have been dx with MS for 9 years now and have never heard it call a syndrome. As far as I know it is an autoimmune disease. While there in no cure for MS there is medication on the markert that will slow the progression. It hasn't been an easy ride for me I am on my forth medication hoping that this one with help. The MS has been real aggressive on my eyesight and I have just be dx with retintits pigmatosa (sp) so either way the out come for me could be blindness.

I started the gluten-free diet 1/08 after many years of stomach problems and docs not being able help me. My sister-in-law gave me the idea. It has helped my stomach bunches and I knwo in the long run it will help with my health in general.

My B12 lever was also checked in the beginning and at the point it was fine but withing the past year it has been low so I am now on B12 injections.

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Chrissy

#40 ShayFL

 
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Posted 17 September 2008 - 11:55 AM

Chrissy - Check out "The MS Recovery Diet" as I feel it condenses all of the information/research on a diet/MS connection . What is autoimmune disease? Why does the body attack itself in the first place? It doesnt make sense for the body to attack itself. There is always a trigger. My research indicates a dietary component to MS. Sometimes that diet leads to Candida overgrowth and the fungus is the trigger. Sometimes it is a specific food like gluten or casein.
  • 0
GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

#41 Chrissyb

 
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Posted 17 September 2008 - 02:08 PM

Shay it just so happens that the book is at the library so I have placed a hold on it. It makes sense to my that something had to trigger the MS and I am all for doing what I can the natural way to help my healing. I do kow that since I have been gluten free that I have lost 30lbs and my stomach for the most part has been doing better. I have been finding that I seem to be more sensative for certain fruits like apples and bananas whichs make my stomach burn, but they didn't before. The last time I ate an egg I want to barf please excuse my colorful language. I can eat things with egg in it like cake but not just a plain egg ick.

I would love to eat my fresh vegies and find fruits I can tolerate, maybe I will have to do can or frozen, I seem to handel berries ok. I am just having a hard time being disciplined in eating them or some days in eating at all.

Like you say the MS had to come from somewhere. Now if I can make you go back there haha.

Chrissy
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Chrissy

#42 georgie

 
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Posted 17 September 2008 - 03:15 PM

My Dr ( naturopath as well as normal Dr ) found she had a patient with MS that only started to improve after being totally gluten-free, and wearing a mask to feed her chickens. The chicken's feed had wheat and the dust was Glutening her. After wearing the mask for a while her numb patches improved.

I have four or five autoimmune diseases - all happening or coming out of remission - in the last few years. I blame the chicken pox vaccine I had in 2001. I did not know that people with autoimmune diseases should not have live vaccines....
  • 0


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.
Diagnosed June 2006 with adrenal insufficiency.
Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.
Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.
Trialled Dairy Free Diet and reacted positively to that challenge in January 07.
News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !
Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

#43 Judyin Philly

 
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Posted 17 September 2008 - 03:33 PM

Chrissy - Check out "The MS Recovery Diet" as I feel it condenses all of the information/research on a diet/MS connection . What is autoimmune disease? Why does the body attack itself in the first place? It doesnt make sense for the body to attack itself. There is always a trigger. My research indicates a dietary component to MS. Sometimes that diet leads to Candida overgrowth and the fungus is the trigger. Sometimes it is a specific food like gluten or casein.

great post by kinda scary............ :ph34r:
in a nut shell.......if i read right....... your saying that according to this book the un dx celiac for like 20 years can lead to MS? I probably read it wrong and if so i'm sorry!

since i have the bright objects on brain MRI this is kinda scary but i know these have to be in special places in there. Probably should have re read the thread again before posting.
thanks again for the post!
Judy
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#44 ShayFL

 
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Posted 18 September 2008 - 10:43 AM

I didnt include the term Celiac in my description, nor does the book focus on it. Instead, the book focuses on the different dietary factors that can lead to MS. One of them is gluten. This diet excludes, gluten, dairy, eggs, yeast, legumes and limits animal fats. It is not an easy diet. But the book is a good read and well thought out and researched IMO. Another book I read focuses on Candida and a diet/regime to conquer it. This can lead to remission in many MS patients. It does not surprise me that dietary changes can help many illnesses.
  • 0
GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

#45 Judyin Philly

 
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Posted 18 September 2008 - 12:32 PM

I didnt include the term Celiac in my description, nor does the book focus on it. Instead, the book focuses on the different dietary factors that can lead to MS. One of them is gluten. This diet excludes, gluten, dairy, eggs, yeast, legumes and limits animal fats. It is not an easy diet. But the book is a good read and well thought out and researched IMO. Another book I read focuses on Candida and a diet/regime to conquer it. This can lead to remission in many MS patients. It does not surprise me that dietary changes can help many illnesses.


It does not surprise me that dietary changes can help many illnesses either. I totally agree with you
I know you didn't include the term celiac. I guess after seeing so many posts here on 'what was your trigger' for celiac disease........i was wondering if gluten could be the 'trigger' for MS. 2 of my friends who have MS have found the foods you listed helped them after they deleted them for their diets.
Since there seem that the gluten ataxia issue also, guess they are totally different, I agree. Just got my brain wondering. The book does sound good. Not going to worry about the 'what if's' until i have too i guess. I'm doing all the right things i can for my eating health now, so will just let it be.
thanks again for the post and info.
Judy
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Judy in Southern CA




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