Question About An Mri

[lynnelise]

Yesterday I had a brain MRI due to continuing problems with parathesia, peripherial neuropathy, and extreme fatigue. These problems did start before diagnoses when I was deficient in B12. I have supplimented and my levels are now normal but not so high that too much B12 could be an issue. Could these problems be long-term damage from the deficiency and if so will that show on the MRI? I have also been diagnosed with recurrent/chronic mono and have had several attacks of shingles both of which I believe can affect nerves.

My neurologists does not think the issue is MS as the pattern of the symptoms is off but he ordered the MRI just to be certain. He also doesn't think it could be shingles because he says the nerve damage should be contained to the area of the attack.

So basically I'm just wondering what types of issues the MRI can show. Will it be helpful in showing long term damage from vitamin deficiency or can it only be used to rule out MS?

I am having another test next week but it is mainly checking for carpal tunnel.

[ravenwoodglass]

With people who have gluten ataxia a brain MRI will show what are called UBOs or Unidentified Bright Objects that are similiar to the lesions seen in MS but not in the same places. Not all doctors are aware of what UBOs signify and you may hear that they are meaningless. They are not. I would have been diagnosed 5 years before I was if my neuro hadn't been clueless. His response was 'Lots of people have them, here have a script for prozac'.

[IrishHeart]

I have burning nerve pain, muscle wasting and weakness, and body-wide parasthesia and have had brain, C-spine and lumbar spine MRIs, EMGs on my legs and arms, and I have been examined by various neuros, rheumies, spine specialists and their conclusion is...."no clue". It is NOT MS. That one they know. (as I have a cousin with MS, I was concerned)

My B-12 and folate deficiencies are resolved now and yet, I still BURN. I have regained some strength in my muscles, but it is slow progress.

Small fiber neuropathy is undetectable on EMGs and occurs in a small percentage of celiacs, but resolves for most, from what I have read --in time ---on a gluten-free diet.

As Raven states, the white matter lesions may not seem significant in a MS DX, but may be relevant to celiac. Mention this to your neurologist. Bring an article on it with you. He/she may not know.

My doctor has been honest with me, saying he consulted some neuros on my behalf and they cannot say if it will ever resolve or not for me. They all just say "give it time." Not easy when you are uncomfortable 24/7, is it?

It is LESS intense than it was, which gives me hope, so I remain optimistic.

This does not mean that is what is happening to you, okay? You are much younger than I am and that may be very beneficial in your recovery time!!

Many people on here report a total reversal of parasthesia and neuro issues, so you should think positively as well.

I trust you have ruled out diabetes?-- which can also cause peripheral neuropathy, parasthesia, carpal tunnel and fatigue.

[lynnelise]

So glad to have your input as I consider you guys to be two of the most helpful on the boards! I personally feel that the issues are probably caused by the years of undiagnosed celiac. I will print some stuff to show the doctor at my follow-up! My blood sugar has always been really good so I don't think that is the cause. I have been on the diet for almost 2 and half years so I may just need more time! Thanks for the encouragement and it helps to just know you aren't alone! Misery loves company I hear! Not that I want others to be in pain! I'd rather we were all feeling good with all nerves firing appropriately! lol

[IrishHeart]

I hope you get some answers and some relief soon.

I know Raven's nerve stuff finally resolved after a while. She made me feel encouraged when she told me that. Others told me they had "burning" in their faces, hands, feet, trunk and it disappeared.

I know how frustrating all this can be though when it lingers so long.

The thing is, there is still so much "they" do not know about about celiac and related disorders, and it seems that most of us on here have symptoms they cannot always explain to us.

I am about done looking for any answers regarding this burning sensation I have in my nerves, muscles and skin because I get my hopes up every time I see another "specialist" only to be disappointed over and over again. The last one told me it is probably inflammation from celiac pinching nerves and to take drugs. (that's the usual response, but I cannot tolerate meds)

If you ever get a straight answer, please --tell me! I will rejoice for you!

[ctenny]

My doctor visits concerning the symptoms that led to a diagnosis of Celiac have been going on for a year. Just 2 weeks ago was I finally given the answer: Celiac.

I went to various doctors, in this order: General Doc, Neurologist, Rhumotologist, Gastroenterologist... it just goes to show that the symptoms of Celiac vary widely. I barely had the gastro Celiac symptoms, or atleast the gastric symptoms weren't the ones that bothered me and caused me to see a doctor in the first place.

What made me see the doctor was:

-numb tongue

-muscle spasms all over the body

-limbs falling asleep randomly

-others

Most of that has gone away. The main issue I still have (and has always been the most frustrating) is the numb tongue. It makes speaking hard.

Does anyone else have issues with their tongue going numb?

[IrishHeart]

Does anyone else have issues with their tongue going numb?

Mine burns and feels tingly. since 2008

[ctenny]

Mine burns and feels tingly. since 2008

Why didn't the gluten-free diet help?

[IrishHeart]

Why didn't the gluten-free diet help?

I was left unDXed for so long, but have been gluten-free for a year.

It is MUCH better, but not gone yet. I have faith.

[ctenny]

I was left unDXed for so long, but have been gluten-free for a year.

It is MUCH better, but not gone yet. I have faith.

Oh! I was scared for a second. I thought your issues were permanent .

I'm glad to hear they're improving. I can't imagine how good I'll feel a year from now. This is my second year in college and I can honestly say only one semester of it was enjoyable. This time last year everything started going down hill for me (symptom-wise), but since I've taken gluten out I guess I've hit the rock bottom and there can only be improvement from here. Good luck with your continued healing!

[IrishHeart]

Oh! I was scared for a second. I thought your issues were permanent .

I'm glad to hear they're improving. I can't imagine how good I'll feel a year from now. This is my second year in college and I can honestly say only one semester of it was enjoyable. This time last year everything started going down hill for me (symptom-wise), but since I've taken gluten out I guess I've hit the rock bottom and there can only be improvement from here. Good luck with your continued healing!

We hope they are not permanent. Time will tell. I am not one to give up. My doc says this was a "healing year" --as is next year, and the year after that, and the year after that .... I said "great, I'll be a healthy old broad!"

It is hard to think ahead--but it is true that we improve each year! Healing takes time, but symptoms reverse and you will feel better and better. Your advantage is--you were DXed at a younger age, so your healing time will be faster! I was a college prof., so I know the stress you are under.

Be good to yourself! Take time to relax, okay?

Best wishes to you--hang in there!

[lynnelise]

My tongue burns and goes tingly all the time! That actually didn't start until after I went gluten-free. Probably within the last year. I'll definitely report back after my follow-up.

I wish I had a little more faith that I'd get an answer but after seeing a rhuematologist, endocrinologist, and immunologist as well as a few GPs I'm kind of out of hope! lol

[IrishHeart]

My tongue burns and goes tingly all the time! That actually didn't start until after I went gluten-free. Probably within the last year. I'll definitely report back after my follow-up.

I wish I had a little more faith that I'd get an answer but after seeing a rhuematologist, endocrinologist, and immunologist as well as a few GPs I'm kind of out of hope! lol

I hear you. All those for me too ---AND an lyme disease specialist and environmental allergist.

Tongue burning can be caused by many things, I have read.

Hormonal shifts, allergies and intolerances, yeast infections, inflammation and vitamin deficiencies.

The best part is.... anyone who had it tells me it went away after a while gluten-free. So, do not give up hope!

Do you have burny sensations anywhere else?

[lynnelise]

I hear you. All those for me too ---AND an lyme disease specialist and environmental allergist.

Tongue burning can be caused by many things, I have read.

Hormonal shifts, allergies and intolerances, yeast infections, inflammation and vitamin deficiencies.

The best part is.... anyone who had it tells me it went away after a while gluten-free. So, do not give up hope!

Do you have burny sensations anywhere else?

I get these burning feelings like someone has put a match to my skin mostly on my lower back and legs. I get random tingly but not really burning spots all over my body, face, and scalp. My hands go completely numb a whole lot and part of my feet go numb. I also get a sensation that I can't really describe. It feels like the nerves in my legs are vibrating. It's not painful, just weird and it gets really bad when I get tired.

[IrishHeart]

I get these burning feelings like someone has put a match to my skin mostly on my lower back and legs. I get random tingly but not really burning spots all over my body, face, and scalp. My hands go completely numb a whole lot and part of my feet go numb. I also get a sensation that I can't really describe. It feels like the nerves in my legs are vibrating. It's not painful, just weird and it gets really bad when I get tired.

Sounds familiar. I had the vibrating thing too. Weird.

Mine feels like I have burning liquid flowing through my blood. Not fun at all. My skin feels like I have the worst sunburn ever.

It is worse when glutened. Doc says he cannot explain it except muscle/tissue inflammation and nerve inflammation.

It has lessened, but I live with this pain 24/7.

I just hope it goes away eventually, like everyone else's did.

Let me know what your testing reveals. I hope you get some answers, hon!

[lynnelise]

I had my follow-up with the neurologist today. The MRI showed that I have a Chiari Malformation. The doctor still did the nerve conduction study as scheduled because he said a lot of the time Chiari malformation has no symptoms so he wanted to rule out carpal tunnel and pinched nerves as causes of my symptoms. Since those tests were fine that pretty much leaves Chiari as the cause of my issues. He ordered a second MRI concentrating on my C-spine to get a better idea of what we are dealing with before he makes any recommendations.

While I'm a little freaked out by what I'm reading about possible brain surgery, I'm not going to worry. In some ways I feel a lot better knowing that all these crazy symptoms do fall into the disorder. I'm so used to tests coming back normal and doctors acting like I am crazy or a hypochondriac. I'm also relieved that there were no signs of MS. The doctor says he feels 100% confident in completely ruling MS out!

[Takala]

((((lynnelise)))))

While is is a shock to get a diagnosis with something off with one's brain, I am happy that at least you seem to have a neurologist who is trying to diagnose you in a timely matter.

[lynnelise]

((((lynnelise)))))

While is is a shock to get a diagnosis with something off with one's brain, I am happy that at least you seem to have a neurologist who is trying to diagnose you in a timely matter.

While I had good reason to believe that I did not have MS I was a little bit prepared to hear that possibility due to symptoms but this wasn't on my radar at all so it really did kind of shock me. Then the more I read, the more it seems the only relief for the neurological issues is decompression surgery which sounds pretty unpleasant. I'm just trying to go on as I have been until further testing and save the worry. No use stressing over something that may end up not being necessary!

[Bubba's Mom]

While I had good reason to believe that I did not have MS I was a little bit prepared to hear that possibility due to symptoms but this wasn't on my radar at all so it really did kind of shock me. Then the more I read, the more it seems the only relief for the neurological issues is decompression surgery which sounds pretty unpleasant. I'm just trying to go on as I have been until further testing and save the worry. No use stressing over something that may end up not being necessary!

When the Dr.s find something that could be causing your symptoms, it's a little bit of relief knowing you're not just imagining things, which is followed by the shock of being DXed with such a thing!

Did your symptoms come on suddenly, or have you had them for some time? I'm curious because I've been having neuro symptoms too.

If you have to have the surgery it will be uncomfortable, but you will heal. I had a spinal surgery on the disks in my neck. Ruptured disks were causing pressure on my spinal cord. They removed two disks and put in a piece of bone to replace them, followed by a plate screwed into the bones to hold eveything in place. I had to wear a neckbrace at first, which was the hardest part of it all. Six weeks later I was doing great, with the nerve issues healing a bit slower.

I would think your surgery, if you have it, might be similar?

[lynnelise]

When the Dr.s find something that could be causing your symptoms, it's a little bit of relief knowing you're not just imagining things, which is followed by the shock of being DXed with such a thing!

Did your symptoms come on suddenly, or have you had them for some time? I'm curious because I've been having neuro symptoms too.

If you have to have the surgery it will be uncomfortable, but you will heal. I had a spinal surgery on the disks in my neck. Ruptured disks were causing pressure on my spinal cord. They removed two disks and put in a piece of bone to replace them, followed by a plate screwed into the bones to hold eveything in place. I had to wear a neckbrace at first, which was the hardest part of it all. Six weeks later I was doing great, with the nerve issues healing a bit slower.

I would think your surgery, if you have it, might be similar?

My symptoms came on gradually and at first were attributed to my B12 deficiency. Well I brought that up to normal levels and still had worsening issues. Then I got mono and shingles so that was blamed. Well three years later my hands and feet started going completely numb pretty much constantly and I started having burning sensations all over. I also kept getting daily "sinus" headaches, vertigo, and feeling like I was about to pass out. My regular doctor refered me to the neurologist because he thought the extreme fatigue coupled with neuro issues could indicate MS and the neurologist agreed and wanted an MRI. So honestly while I'm a little freaked out I am also enormously relieved. Once you go so long getting dismissed by doctors it almost feels like a victory to get a diagnoses and finally be acknowledged as telling the truth!

I've been keeping up with your thread and praying about your issues and your trip to Mayo! I hope you get answers soon! It's so scary to know something is wrong but not know what!

[IrishHeart]

My mother, 2 cousins, and one of her daughters all have Arnold-Chiari Malformation. This is actually considered a rare malformation. My mother's is mild, manageable but occasionally gives her headaches. The child had surgery as a youngster and is free of symptoms.

I feared that I also had this because of my symptoms, but it was ruled out.

Rarely is surgery done, from what I understand, but if it will relieve those symptoms, then it will be worth having it done, so you can get out of this discomfort!

I am so glad you pursued this and got an ANSWER! Yes, I am with you---it seems ridiculous that we have to keep pressing until someone takes us seriously. Good thing you were relentless.

I hope you will get the relief you so deserve.

Keep us posted, please! Best wishes, hon.

[lynnelise]

My mother, 2 cousins, and one of her daughters all have Arnold-Chiari Malformation. This is actually considered a rare malformation. My mother's is mild, manageable but occasionally gives her headaches. The child had surgery as a youngster and is free of symptoms.

I feared that I also had this because of my symptoms, but it was ruled out.

Rarely is surgery done, from what I understand, but if it will relieve those symptoms, then it will be worth having it done, so you can get out of this discomfort!

I am so glad you pursued this and got an ANSWER! Yes, I am with you---it seems ridiculous that we have to keep pressing until someone takes us seriously. Good thing you were relentless.

I hope you will get the relief you so deserve.

Keep us posted, please! Best wishes, hon.

It's nice to know other people have managed it without surgery. Stories I'm reading about the surgery seem very mixed. Some people had great success but many others had no relief! I'm a bit worried because it seems the neuro symptoms like I have are most likely to need surgery. I probably need to push to see a specialist. I'm in a rural area and the neurologist has little experience with this. I'll see how I feel after my 2nd MRI and that follow-up!

[GottaSki]

Thanks for this thread....I'll be having an MRI in the coming months as MS has never been ruled out for me. Although your results are indeed very scary I imagine there is relief of getting some answers.

Hoping your health improves each day and thanks again for sharing

[lynnelise]

Thanks for this thread....I'll be having an MRI in the coming months as MS has never been ruled out for me. Although your results are indeed very scary I imagine there is relief of getting some answers.

Hoping your health improves each day and thanks again for sharing

Good luck with your MRI and I hope you get some answers soon! While there is a bit of fear there is a lot of relief in being able to put a name on what is going on! I guess kind of like the struggle a lot of us go through in being diagnosed with celiac!