Doctor Ordered Mri Of Brain

[MyMississippi]

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.

[darlindeb25]

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! I guess it's the best way to rule out MS.

Good luck!

[ShayFL]

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.

[MyMississippi]

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.

[georgie]

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 .

[TrillumHunter]

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.

[ShayFL]

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.

[ShayFL]

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!

Open Original Shared Link

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.

[gfp]

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....

Open Original Shared Link

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!

[ravenwoodglass]

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.

[MyMississippi]

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

[ShayFL]

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

Open Original Shared Link

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.

[MyMississippi]

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 ?????

[darlindeb25]

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: Open Original Shared Link 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.

[ShayFL]

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

[ravenwoodglass]

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.

I think you are making a wise choice about the MRI. Do get some of the sublingual B12 also, that may help more than you think. While your B12 levels are in a range that would be considered normal that does not mean that your body is able to utilize it. It can take a long time for levels to fall off in blood testing so if you have any past levels sometimes it is helpful to look at them. Often a drop can be seen over time. The B12 is needed to help the nerves fire correctly and it helps a great deal with the healing within the nervous system.

Have they given you a spinal tap yet to look for evidence of the demylination? They did one on me because of the UBO's and they were able to rule out the MS finally that way. Too bad they didn't know what the UBO's were that would have saved me from the spinal. But they didn't and of course I continued to deteriorate until a few years later when they finally diagnosed me. My MS type symptoms resolved in time with the exception of the ataxia although that improved a great deal.

I also agree completely with your last sentence.

[ShayFL]

I agree that getting an MRI for peace of mind is good. But like I said, if it comes back negative for MS (which is highly likely) consider B12 and other things mentioned in this thread.

ALSO get your Vitamin D tested.

[Di-gfree]

This screams thyroid problems to me. My doctor wanted me to get an MRI to investigate the possibility of MS several years ago. I declined - denial perhaps - I've just got too much on my plate right now. Turns out I think most of my symptoms are because of Hashimoto's (that I just been diagnosed with). I did have the low B12, as well; so clearly have problems with assimiliating B12 via my digestive system (so I take a sublingual).

But I'd urge you to get your thyroid panel done. You know, thyroid problems can mimic many diseases - and it's very serious, and should not be ignored. And, oh yes, I've had my TSH only checked all these years - and that was high. Go figure why no one checked into it further (but they obviously went by the old system). Good luck.

[ShayFL]

This screams thyroid problems to me. My doctor wanted me to get an MRI to investigate the possibility of MS several years ago. I declined - denial perhaps - I've just got too much on my plate right now. Turns out I think most of my symptoms are because of Hashimoto's (that I just been diagnosed with). I did have the low B12, as well; so clearly have problems with assimiliating B12 via my digestive system (so I take a sublingual).

But I'd urge you to get your thyroid panel done. You know, thyroid problems can mimic many diseases - and it's very serious, and should not be ignored. And, oh yes, I've had my TSH only checked all these years - and that was high. Go figure why no one checked into it further (but they obviously went by the old system). Good luck.

This was/is EXACTLY my experience. Thyroid made ALL the difference for MANY of my symptoms. It completely gets rid of my muscle twitching and facial numbness. As I was titrating up to the right dose, I knew when I needed an increase because my muscles would start twitching all over and my lips would go numb.

I think my neuropathy is related to B12 and malabsorption. It is getting better too.

I am convinced I will have TOTAL resolution of neurological symptoms.

[MyMississippi]

Here's the thyroid tests I've had done over the years--- what do you think ???

In the year 1998- (before gluten free- ) No neuro symptoms but the PA thought my thyroid was enlarged :

T uptake 26

T4 10.0

T7 2.6

TSH 5.1

In the year 2001(first tingling and numbness symptoms:)

T- uptake 29.2

T 4 8.3

FTI 2.42

TSH sensitive- 2.08

In the year 2006:

T3 uptake 32

T4 total 10.0

Free T 4 index ( T7) 3.2

TSH 3.79

In the year 2008 :

TSH 3.16

What's the verdict ????? Hypothyroid for sure, or just maybe ????

Thanks for input----

[ShayFL]

I dont see the ranges for T4 and cannot tell if it is all are FREE T4. So I am only looking at TSH and with your numbers like that bouncing all around....my vote is for Hashimotos Hypothyroid (it makes the thyroid sputter as it is being attacked. Autoimmune).

Have you had antibodies tested????

I would be willing to bet dimes to gluten-free donuts that a lot of your symptoms will clear on proper thyroid medication and a gluten-free diet.

BTW Synthroid made me violently ill. I wont touch it.

I take Armour. Right now Armour is on backorder, but their site says August 18th lower doses will be back to full production and by December the higher doses will be back to normal. This happens once in awhile every few years with Armour. My Doc. gives me an Rx for 4 months at a time thankfully.

If I were you I would ask for:

TSH

Free T4

Free T3

And BOTH antibodies for thyroid.

Plus

Vitamin D

ANA

Ferritin

[MyMississippi]

Shay---

My ferritin was 36

My Anachoice screen w/ REFL to Titer, IFA anachoice screen was NEGATIVE

rheumatoid factor was 8 (normal)

I've been gluten free for 2 years now--- with off and on attempts in the past. (No, I didn't know that switching on and off gluten free diet, could be harmful back then )

I've no doubt my body could be attacking my thyroid---It's seems to be attacking everything else !

which is one reason for the MRI----- it would be reasonable to assume my antibodies are attacking the mylelin sheaths as well.

However----- Fibromyalgia mimics MS and since I had classic fibro symptoms BEFORE neuro symptoms, I am leaning toward Fibro---- as the origin of the fatigue and neuro stuff.

[ShayFL]

You should have enough Ferritin to take Armour without problems, but ideally it should be around 50.

Here are some helpful links:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

***Remember no disease (or syndrome) is an island. They are usually clustered.

[darlindeb25]

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.

That's very true, they are not Doctors, but they are very intelligient people who know what they are talking about...MrsD has her own website, I think, and is one of the most trusted people in that forum.

You haven't listed any sites to back what you are telling us. There is a lot of info out there...wrongdiagnosis.com has a B12 thread that Sally Pacholok R.N. posts in, she is from the book "Could It Be B12" It's a very interesting thread and I have talked with her myself. Have you read there yet?

[ShayFL]

Im not offering any scientific backing on what I am doing to myself. As I said several times....I am experimenting with MYSELF. I am in no way recommending that ANYONE else do what I am doing. I was simply sharing what I am doing. My body has been a science experiment for 15 plus years. Some with doctors involved in the experiment and some on my own. Some things work. Some things dont (for me).

I simply come in here to share. Take away what makes sense and discard the rest. Ignore me entirely. Or read what I have to say and look for support online and in medical libraries.

And I ALWAYS recommend that people do their own research no matter what the read in a forum from me or anyone else. I certainly do.

I listen to others in here, and if something new comes along, I go and see if what they are saying is supported anywhere.

I also do not mind being corrected if I am wrong.

You can Google and find tons of support stating that the more B12 you take orally the less you actually absorb. That is why the FDA has labeled it non-toxic with NO upper limits. So I might just be spending my money and getting nowhere. But I am trying something and I am going to get the uMMA soon and see what my efforts have done (or have not done).