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Doctor Ordered Mri Of Brain


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#1 MyMississippi

 
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Posted 13 August 2008 - 12:22 PM

I am having several symptoms of MS--- my doctor ordered MRI of the brain-----
Has anyone on here with neuropathy had an MRI of brain to rule out MS-----because symptoms are similar.
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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

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#2 darlindeb25

 
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Posted 13 August 2008 - 02:43 PM

Yes I have had an MRI to rule out MS and anything else that might be a problem. I too have neuropathy. I had a brain MRI and a cervical MRI last year. Both came back ok with the exception of one empty cell! :o I guess it's the best way to rule out MS.

Good luck!
  • 0
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!

#3 ShayFL

 
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Posted 13 August 2008 - 03:19 PM

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.

So try not to let it scare you.
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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!

#4 MyMississippi

 
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Posted 13 August 2008 - 08:26 PM

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.

So try not to let it scare you.


Hi Shay, It doesn't scare me, I've seen this coming for a long time------ I got scared about 8 years ago when I had my first symptoms. :) I'm over that now---- Just want to know what's wrong with me.

I think it's either MS or fibromyalgia.
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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

#5 georgie

 
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Posted 13 August 2008 - 10:31 PM

Yes I have had one. I found it quite relaxing although a bit noisy at times. Are you having contrast dye as well ?

You may like to read Sally Pacholoks book 'Could it be B12 ?' where she writes a whole chapter about how low B12 can mimic MS - even to the brain lesions in MRIs. She is a RN and her husband a Dr and she has seen 100s of cases where patients have been wrongly dx because of this.

Having Celiac can lead to low B12 due to malabsorption but it also can be due to the autoimmune type of low B12 which is also associated with Celiac.

Have you had your B12 tested and do you have the paper results sitting there ? Anything less than 400 is probably getting too low and could be causing symptoms of neuropathy etc .
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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!!!

#6 TrillumHunter

 
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Posted 14 August 2008 - 04:17 AM

Yes, I've had two. They were both to rule out MS. I had bright white spots but they were in the "wrong place" to be MS related according to the neuro. It turned out B12 was my problem. With three years of injections and finding out I had celiac, the symptoms resolved.

The scan itself is very noisy and closed in. They put this mask over your face which makes it even more closed. But it is doable and you can get Valium if you need it. I never did even though I am pretty sketchy with tight quarters.
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#7 ShayFL

 
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Posted 14 August 2008 - 05:49 AM

I had an "open" MRI for an injury for a car accident. I am VERY claustrophobic so I was a nervous wreck. But the room had a chair close to the machine where my husband could sit and talk to me while it was happening. I had something covering my eyes, but didnt feel too closed in. Yes, noisy. But not anything horrible. I wont take Valium or drugs like that. But I was fine.

Funny about the B12. My last test showed a level of 280 3 or so years ago. I never retested because I started taking sublingual supplements and knew that it would skew the test unusually high. Why bother. I had injections years ago, but after a few months it didnt seem to help, so we stopped.

Hearing you say it took 3 years........

Well my MMA was normal a few months ago which is supposed to indicate adequate B12 levels.

But I am experimenting anyway. For the last 3 weeks, I have been taking a 5000 Methylcobalmin sublingual tab after each meal and snack (that makes 25000 a day) PLUS I bought a transdermal cream that has 1000 per 1/4 tsp. I am rubbing that into my skin twice daily. My research says we only absorb roughly 2% of what we take in which would mean I am getting about 540 a day. Which is a goodly amount.

And I must say that my neuropathy is finally easing up. MUCH less itching and creepy crawlies. And a substantial decrease in numbness and tingling. My neuro also made my hands feel "stiff" in the morning and the last few mornings they have felt good. I am cautiously optimistic.

So if they say MS or not....You may want to try B12 to see. It cannot hurt.
  • 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!

#8 ShayFL

 
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Posted 14 August 2008 - 05:59 AM

I know this thread is taking on a different direction, but I think it could be important. B12.

I thought having a "nromal" MMA via serum was enough. NOPE!

http://www.b12.com/uMMA.htm

The urinary MMA is much more accurate and sensitive. Seems my normal might not have been normal afterall. I am sticking with the B12 and see what continues to happen.

I have many symptoms of MS, but I am not looking for a dx for that. I just want to get well. They have no cure for MS. And no effective therapy. So personally I dont feel a desire to go down that road.
  • 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!

#9 gfp

 
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Posted 14 August 2008 - 06:12 AM

Hi Shay, It doesn't scare me, I've seen this coming for a long time------ I got scared about 8 years ago when I had my first symptoms. :) I'm over that now---- Just want to know what's wrong with me.

I think it's either MS or fibromyalgia.

As others have said:
However please read this....
http://jccglutenfree....com/halloffame

Specifically there is considerable research that finds symptoms that are expressed on MRI related to celiac disease.
the good news... Read the work of Hadjivassiliou, these symptoms are usually reversible and almost always stop getting worse on a STRICT gluten-free diet.

you should read all this, one is a PDF showing white brain lesions from celiac disease.
You should make sure you print this and take it to your dr/neurologist. Preferably BEFORE the scan!
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#10 ravenwoodglass

 
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Posted 14 August 2008 - 07:32 AM

Specifically there is considerable research that finds symptoms that are expressed on MRI related to celiac disease.
the good news... Read the work of Hadjivassiliou, these symptoms are usually reversible and almost always stop getting worse on a STRICT gluten-free diet.

you should read all this, one is a PDF showing white brain lesions from celiac disease.
You should make sure you print this and take it to your dr/neurologist. Preferably BEFORE the scan!


I had an MRI about 5 years before I was finally diagnosed. The UBOs were clearly visable on the MRI. The report said they were not in the right spot to be demylinating lesions so not diagnostic of MS. What the report did not say was that they were diagnostic of celiac disease. Many US neuros consider them to just be a 'fluke' that 'lots of folks have but they mean nothing'. Mine unfortunately was one of them.
There is a lot on the web about UBOs (unidentified bright objects) and their presence in celiac disease. Do be sure to take the above advice.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#11 MyMississippi

 
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Posted 14 August 2008 - 10:17 AM

Thanks everyone ---- I will look into the suggestions---- very interesting----

Oh, here's what some of my lab showed:

My B12 was 635 --- that seems to be a good number---

I am "borderline anemic" Hgb is 12.0 and Hct is 37.0 (Interestingly, my 46 year old sister has been recently diagnosed with anemia - source unknown )

My TSH, 3rd Generation was 3.16

Bone density showed mild osteopenia
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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

#12 ShayFL

 
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Posted 14 August 2008 - 10:28 AM

Ummm...is your doctor using the "old" TSH guidelines????? They were changed some 5 years ago.

http://thyroid.about.../a/labs2003.htm

You are clearly HYPOTHYROID.

And being hypothyroid can lead to all sorts of neurological conditions that mimic MS. ALL of those tests may be a BIG waste when all you need is proper thyroid medication.

I was HYPOTHYROID at 2.8 TSH. And I take Armour which will suppress TSH. I do not feel well unless my TSH is around .03.

The thyroid problem and anemia also tie in with Celiac and gluten sensitivity.

You will need to get your iron stores up so that you can utilize your thyroid medication properly. There is A LOT of fabulous info here:

www.stopthethyroidmadness.com

It is up to you if you want to go through with the MRI. But if it were me, I would print out the NEW TSH guidelines and take them to my doctor and ask to be treated. I mean demand to be treated. :angry:
  • 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!

#13 MyMississippi

 
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Posted 14 August 2008 - 10:08 PM

Hi Shay,

My doctor did say I might be hypothyroid and he gave me some Synthroid 25 mcg to take and see if it helped with the fatigue. I have not started it yet.

He also mentioned Hashimoto thyroid---- But I think he is focused on the possible MS before we chase any more rabbits-- : )

Some days, I feel almost normal energy-- some days I am dragging ------

However, the symptom of left facial numbness and tingling with distortion to my hearing in left ear sounds more like MS than hypothyroidism. I also have numbness and tingling everywhere that comes and goes, and feelings of weakness to an arm or leg that lasts for anywhere from 24 hr to 3 or 4 days. I have "vibrating" feelings at times. I have visual disturbances also. All symptoms come and go but each year, I am a little worse. Stress and overexertion make me much worse.

I want to have the brain MRI to rule out MS---- I have put it off long enough.

However, the more I study Celiac, the more I am convinced that it is possible all the neuropathy, the hypothyroidism, the low hgb, pre-diabetes, etc. is related to long standing and undiagnosed Celiac.

Thank you so much for all the info you give---- I appreciate it --- : )

By the way, how'd you get so smart ????? :D
  • 0
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

#14 darlindeb25

 
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Posted 15 August 2008 - 03:14 AM

My B12 was 635 --- that seems to be a good number---


Have you had your B12 tested and do you have the paper results sitting there ? Anything less than 400 is probably getting too low and could be causing symptoms of neuropathy etc .


First, both numbers are too low for a good level of B12. Doctors still go by a normal range of 200-1100, but, if you have any nerve pain involvement, those numbers are too low. I take 3000mcg of B12, sublingual methycobalamin, and my level is now 1013, 3 yrs ago when I was taking 1000mcg, my level was 1237. The normal range is not correct. A level of 200 is way too low.

I am experimenting anyway. For the last 3 weeks, I have been taking a 5000 Methylcobalmin sublingual tab after each meal and snack (that makes 25000 a day) PLUS I bought a transdermal cream that has 1000 per 1/4 tsp. I am rubbing that into my skin twice daily. My research says we only absorb roughly 2% of what we take in which would mean I am getting about 540 a day. Which is a goodly amount.


ShayFl...that's way too much B12 in a day. Here's a thread on B12: http://neurotalk.psy...hread43009.html Many people take 5000mcg daily, but I have never heard anyone say they are taking as much as you are. I was taking 3000 a day and after reading this thread, I cut mine back to every other day.

I too had an open MRI, I am claustrophobic, and many, many times I wanted to push that little button and get the h@$% out of there, but I made it. They do have a lot of stuff on your head for a brain MRI, it's like being in a football helmit with blinders on. They are very noisey and it takes too much time, but needed to be done. I don't know that I will ever do one again, but I am proud of myself for making it through the 2 I did do! :) Some people have told me they just lay back and go to sleep, I don't know how with all the noise, but they say they are easy.
  • 0
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!

#15 ShayFL

 
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Posted 15 August 2008 - 04:11 AM

Thank you Deb,

But that thread has no expertise or scientific backing of ANY kind. Just a few people talking about B12 levels and one person Mr D giving advice to cut back without any support for his recommendation.

Absorption of dietary B-12 takes place in the very last part of the small intestine, right before the colon. Absorption requires a biochemical helper molecule called “intrinsic factor,” which is a glycoprotein normally secreted by cells lining your stomach. Strong stomach hydrochloric acid is also required to split up this huge molecule. (That's why a weak acid like vitamin C (ascorbic acid) is harmless to B-12, persistent myths to the contrary).

Incidentally, even sublingual (under-the-tongue) B-12 supplements are probably ineffective because the cobalamin molecule is too large to diffuse through the mucosa of the mouth. You still just swallow it with your saliva and absorb roughly 2%.

And if your body no longer makes intrinsic factor like it should, you cannot absorb oral B-12 supplements very well, either.

I am possibly only absorbing 2% of what I take in which is far less than injections would get me. Note that I said I was "experimenting" with myself and did not offer up that ANYONE else should experiment.

No toxic or adverse effects have been associated with large intakes of vitamin B12 from food or supplements in healthy people. Doses as high as 1 mg (1000 mcg) daily by mouth or 1 mg monthly by intramuscular (IM) injection have been used to treat pernicious anemia without significant side effects. When high doses of vitamin B12 are given orally, only a small percentage can be absorbed, which may explain the low toxicity. Because of the low toxicity of vitamin B12, no tolerable upper intake level (UL) was set by the Food and Nutrition Board in 1998 when the RDA was revised (6).

I dont advertise this in here, but I have a Phd through Clayton College in Holistic Nutrition. Nutrition has been an interest (I worked in the field for 5 years) and hobby of mine for over 15 years.
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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!




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