Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Tinnitus And Balance Problems/mild Vertigo
0

52 posts in this topic

woo, lots of info here, and hopefully helping many readers!

Another update: I got the results from my balance test. According to the text, the amount of dizziness caused by the water-in-ear test was the same on both sides, and any non-visual test was normal as well, so that pretty well rules out a vestibular problem. So, it's not my ear, and not Meniere's or anything like that (phew!)

However - and Jenny, this makes me curious about your problem - I had some trouble with the visual tracking parts of the test. Now, my vision is bad, and has gotten dramatically worse over the past year. I have trouble using both eyes at once, so not too surprised it came out abnormal. However, is it possible that problems with my vision are causing/aggravating the vertigo? Or is it something neurological?

The ENT doc suggested I see a neurologist (incidentally, I just saw one, and am getting another MRI done (for something unrelated, so I hope), but its with the contrast dye, so if anything is up with my pteutary or something, he should be able to see it. I will discuss my vertigo problem with him after the test

I am also seeing an opthomologist next month. I saw one for most of my life (since age 2) until my doc retired a few years ago. Will discuss any links to vertigo as well (I do find that when I have to shift my eyes from one thing to another frequently the vertigo gets a bit worse)

So basically, my vertigo is not vestibular. Back to square 1

In response to all the discussion here:

Still not sure about this Gluten Ataxia thing. Or at least I don't think I have it. I will eat things I have cooked myself, 99.99% guaranteed gluten free, and still get dizzy. Alternatively, I'll get glutened and not feel particularly dizzy. I don't think gluten is causing the vertigo, but of course, it certainly doesn't help. For me it still seems to be aggravated by salt more than anything.

Kamma: Your description of your head/upper body suddenly rotating. That's totally me! When I first got vertigo (while in Japan a few years ago, before gluten-free, in terrible humidity) that's how I was, feeling like and/or physically bobbing back and forth. Of course, focusing on the sensation and stressing about it makes it worse.

Do you find it pulses slightly? maybe along with your heartbeat?

I'm also considering if the problem might be linked to the circulatory system as well? I have a very strong heartbeat, though my bloodpressure is more or less normal, low cholestorol, nothing that would affect my heart...

Aanyway, even though I don't have a vestibular problem, keep the discussion going! Lots of information here and help for all of us.

In the meantime, my best advice is to keep away from the gluten, pay attention to other foods that aggravate your symptoms, and don't stress about it

Good luck all

Peggy

0

Share this post


Link to post
Share on other sites


Ads by Google:

Well darn it - so frustrating that they are not finding it yet! Hopefully it is something with an easy fix, like the visual problem.

Although curious about the salt aspect of things - is there any way to get a false negative on the tests for Meniere's, by any chance? I know that's affected by salt, but that's as far as my knowledge goes in that arena. I know nothin' about the testing for it, really.

I keep perking up my ears when I hear issues with dizziness, now, in case it's something that might relate here! :)

0

Share this post


Link to post
Share on other sites

Pegleg, for me my eyes were not able to see at the same point together. One eye seemed to see a little higher than the other. The prism sort of tricks the eyes to see at the same point together. I had gone to a neuro also for possible MS. I had many problems besides the dizziness. I had a stiff neck all the time and when I walked I felt like I leaned to the right. After I got the glasses I felt so much better. I don't know how long before my stiff neck went away, maybe a month. But I didn't feel like I was walking so weird anymore.

Please look at her website and see if any of those symptoms pertain to you. She is the nicest doctor and will take the time to talk to you. She is in Michigan. Her website is vsofb.com.

I was dizzy for a year and it had to be the worst year of my life. So debilitating (sp?). I had a lot of anxiety when I was dizzy.

Good luck to you in finding the right answer.

0

Share this post


Link to post
Share on other sites

Jenny, I tried to take their online test for the eye problem at the website you gave but it won't recognize my email address (it has a .ca endng as I'm in Canada)! It's odd.

Pegleg, you are about the first person that I've come across in the past two years that has had this head bobbing, torso rotating movement in addition to the vertigo. I'm very pleased as I feel like a real oddball and it's been very disheartening trying to pigeonhole this experience and label it as this or that. Being able to name something and consequently deal and manage it is so important.

I just had a balance test this week as well where the glasses / camera are put over your eyes and the water in the ears thingy. As soon as the technician put the glasses on, my head started to do the bobbing thing so I wonder how much I'm using my eyes to compensate for the vertigo that's always in my head. I had more induced vertigo in one ear (right) than in my left ear when they shot the the water in. I'll get my results in a few weeks.

Just want to say thank you to everyone for sharing their experiences. It's been a very lonely last few years trying to figure stuff out and having to reduce my life to accommodate what I'm experiencing physically. You guys are very heartwarming!

Kamma

0

Share this post


Link to post
Share on other sites

Kamma, you may want to call them. They are so nice there, I'm sure someone can help you. I feel like they gave me my life back in a way. A whole year of being dizzy every day and not being able to participate in anything was so hard for me.

0

Share this post


Link to post
Share on other sites




lot of long replies here but so far I have it down to.

Meniere is related to Coeliac

Going gluten free is unlikely to help your ears but having to go Gluten Free means you are more likely to have or develop Menieres.

I been gluten-free for a week and the tinnitus hissing is as loud as ever. Starting to think they are not related, low sodium might be the key

0

Share this post


Link to post
Share on other sites

can people give me a rough timeframe here been going a week no difference so far, at what point does Gluten-Free = less vertigo and tinnitus?

Although it seems I have Meneires which sucks I still cling to hope I just have to remain gluten-free.

0

Share this post


Link to post
Share on other sites

Hi UC,

I am sorry to hear you are having problems. There are other possibilities besides Menier's though right? You may have low B-12 or other vitamin levels from malabsorption. That can cause nerve damage. Some of that might correct given enough time gluten-free, so that your intestine can heal and start absorbing nutrients correctly. Have you read up on gluten ataxia? Gluten ataxia is caused by celiac also and has some similar symptoms. They say that the nerve damage issues take a while to resolve, if they do resolve. Six months or more perhaps.

0

Share this post


Link to post
Share on other sites

Unhappy Coeliac,

I'm on gluten right now in preparation to be tested for celiac but during the summer when I started to suspect that my ataxia, vertigo, tinnitus, exhaustion were gluten related, I eliminated it from my diet. For me, it took about a week to two weeks before I began to see an improvement. I was already on a low sodium diet as it was recommended by an ENT so that probably helped too.

There was some speculation months ago that I might have meneire's but while I had three of the four symptoms of classcal meneires, I did not have the hearing loss. Do you have hearing loss in addition to your tinnitus, vertigo and ear pressure?

0

Share this post


Link to post
Share on other sites

Unhappy Coeliac,

I'm on gluten right now in preparation to be tested for celiac but during the summer when I started to suspect that my ataxia, vertigo, tinnitus, exhaustion were gluten related, I eliminated it from my diet. For me, it took about a week to two weeks before I began to see an improvement. I was already on a low sodium diet as it was recommended by an ENT so that probably helped too.

There was some speculation months ago that I might have meneire's but while I had three of the four symptoms of classcal meneires, I did not have the hearing loss. Do you have hearing loss in addition to your tinnitus, vertigo and ear pressure?

yes sadly I have hearing loss in the classical kind of meniere's way, worse at the lower frequencies. I've had a brain scan and there is apparently nothing wrong so the ENT said probably it's neurological. Low salt diet is quite extreme in my eyes, basically confines me to veggies which make me gag for potentially the next 2/3's of my life. No alcohol no nothing I am still a young man will ruin my life and make me even more miserable!

I have had a cold maybe thats making the tinnitus worse hopefully it is because being strictly gluten free has no had an affect so far. It's been completely underwhelming really I thought I would also be sleeping less being Gluten-Free but no, I should just go back to eating pizzas!

0

Share this post


Link to post
Share on other sites

Nah, don't give up on it yet. Give it a few more weeks to let your body re-adjust.

Regarding the salt, once you get into it, your tastebuds acclimatize and things don't taste bland nor do you miss tasting the salt. There's a period of adjustment where you go, "wow, this tastes like nothing without salt!" but that disappears eventually and you begin to taste the actual flavours of the food. Now, even if a little bit of salt is added to food that someone else prepares, I am able to taste it right away.

Im sorry to hear you have the hearng loss as well. Is it in both ears or just the one?

0

Share this post


Link to post
Share on other sites

can people give me a rough timeframe here been going a week no difference so far, at what point does Gluten-Free = less vertigo and tinnitus?

Although it seems I have Meneires which sucks I still cling to hope I just have to remain gluten-free.

for me, the vertigo didn't even present until more than a year after I'd been gluten free. And I have not had any cross contamination in quite some time, I'm extremely careful with what I eat, and I *know* it when I've been cc'd, because within 20 to 30 minutes, I'll be in pain, doubled over and can't breathe.

The easiest way to lower your salt intake is to stop eating manufactured foods and cut out bubbly soft drinks. Salt is necessary in the diet, but if your diet consists mainly of packaged man-made foods, you're getting too much of it. If you eat whole, natural foods, and just salt to taste, you can do ok. Up to 1/2 tsp of salt per day is fine, and that's quite a lot, if it's just sprinkled on your meals.

0

Share this post


Link to post
Share on other sites

I was diagnosed with Menieres almost 30 years ago. Dizziness, nausea, tinnitis, ears feeling stuffed with cotton, reduced hearing. The meds they gave me knocked me out so badly that my 3 year old climbed up the cabinets unnoticed, found the matches, and I woke up to the carpet on fire. Thank God for adrenaline. Put it out immediately and then called the doctor. He was older and said that before the moderns meds he used to prescribe alfalfa as a diuretic and niacin (not niacinamide) to open the capillaries allowing inner ear to drain properly. Worked like a charm for years. I also have not had significant hearing loss.

It got bad again about 10 years ago and a doctor added Dramamine and Bonine to my regimen. If one didn't work the other one usually did.

Then salt became an issue. I work on keeping the sodium low. Plus my acupuncturist suggested ginkgo biloba which promotes circulation in the head. Much better. I take it daily and highly reccomend Kroeger Herb as they use the powdered leaf with the extract instead of fillers.

Then sugar became an issue. Then gluten. And forget alcohol of any kind in any amount. Instantly dizzy. Arrrrghhh.

So now I use my whole bag of tricks to get thru an attack plus a new one I found in CVS, of all places. It's called DiVertigo. It's a small bottle of essential oils. You rub 1-2 drops behind each ear. It was expensive but they said I could bring it back. No way. Not only does it help the vertigo, it also has helped the tinnitus.

Ingredients: lavender, peppermint, ylang ylang, frankincense, chamomile, and myrrh.

1

Share this post


Link to post
Share on other sites

I have tinnitus, and on/off vertigo as well. No real abnormality vestibular-system wise. I also have a corresponding neurological issue called "visual snow". This all started after I was overmedicated on T4 medication (for my thyroid). Early on during the year, a month or two after my overdose episode, I could not even handle alcohol (one sip would make me instantly dizzy). These days, I can have a drink or two without any 'adverse' effects.. adverse as in beyond you would normally expect from typical alcohol consumption lol. I am currently still eating gluten (not a dx celiac) but believe I am gluten-intolerant; trying to wean myself off it in the new year. I have been lactose intolerant since I was 12 and find that now, I get some sort of weird "ear inflammation" whenever I ingest dairy. This has never happened before. If I have a little bit of a dairy dessert, I will find that shortly after that I get 'popping' in my ear... I will swallow, and my ears will pop several times. This goes on for a while before subsiding. Anyone else have this?

0

Share this post


Link to post
Share on other sites

Ooh look, one of my topics was revived! This is a pretty old post, but it does contain some good information, so maybe ok to keep going. Also interesting to look back and remember what I was going through a couple years ago. I was CONVINCED something was wrong with my inner ear. After all the tests came back negative, in 2012 I worked on my diet instead. I cut back on salt, which helped, cut out dairy, which helped a lot more, and then eventually had to cut out soy as well, which REALLY helped! I now believe that my "vertigo" dizzies are a symptom of my sinuses/ear canal filling up when I eat dairy/soy/too much salt. I still get it a little bit on occasion, but not nearly as bad as it used to be. Soy is now the bane of my existence, even harder to avoid than gluten, and the symptoms hit me right away (though don't last as long). Dairy is less bad, as in I can handle tiny bits every so often (a bit of butter in something, or a tiny piece of cheese), but it gets my sinuses going (that full-ear feeling). I haven't been as strict with the low-salt lately, but if I have anything too salty, MAN do I feel it.

 

As for the tinnitus, it's never gone away, but hasn't gotten any worse and i don't notice it as much.

In any case, I now know that my issues is a sinus problem as a symptom of my intolerances, not an inner ear issue

0

Share this post


Link to post
Share on other sites

Hello,

Sorry for the long post.

I'm new to this. I has experienced some lightheadedness at time last summer. It made me nervous as the summer went on, I decided to quick smoking cold turkey September 22. I smoked for 20 years. The quitting went well. About a month later I was more dizzy. The doctor blew it off, along with my heart burn, tingly toes and fingers and intermittent diarrhea. After a second visit he put me on a antibiotic for a "possible ear infection". Then thing became worse: sever dizziness, ear pressure and tinnitus. I also had non stop diarrhea. I should have never takin the amoxiciline. My fiancée sent me to the emergency room, that doctor ordered a MRI, visit to a ENT and neurologist. What happened! I was healthy maybe a lite overweight 2 months before this.

We'll my primary doctor did not like me going to the other doctors and stated you are perfectly healthy and maybe had the start of meniers.

Neurologist suggested B12 deficiency. Turns out my dad has this and gets shoots. Not the answer for me my B12 is fine. Each appointments is one month away.

ENT and audiologist. Dizzy chair test and ear tests revealed nothing. They do think it is inner ear related.

I found one guy posting about dizziness much like mine and after six months it turned out to be celiac. I read the Mayo clinic symptoms and it mentioned: Nervous system injury, including numbness and tingling in the feet and hands, and possible problems with balance. I also have some rashes on my butt, elbow and shoulder. The rashes aren't supper bad or supper itchy. My teeth are dis colored which is mention on the university of chicagos web site.

I have cut gluten out of my diet. Maybe a bad move before it can get in to a gastro doctor. I did not want to wait because I have been dizzy for 3 months now and want relief ASAP so I can help my family and play more with the kids. After being gluten free I might have some slight improvement in my dizziness, brain fog has improved greatly, heart burn gone, stomach still very burrpy at times. I have lost about 22 lbs since mid October (lucky it have some pounds to spare). I do eat and never go feeling hungry.

Does anyone know how long it would take the dizziness to get better? Any thoughts on this story?

Thanks and happy new year

0

Share this post


Link to post
Share on other sites

Hi Jonvon,

 

Sorry, I have no idea on the recovery time for balance problems related to the ear.  Celiac disease can cause ( and often does cause) malabsorption of nutrients, which can lead to problem throughout the body.  So a wide range of symptoms can appear in  people.  The thing to do is keep 100% away from gluten and see if things improve over the course of a year.  Sometimes it take s a year or more for symptoms to improve.  But the improvement is worth waiting for.

0

Share this post


Link to post
Share on other sites

Hello,

Sorry for the long post.

I'm new to this. I has experienced some lightheadedness at time last summer. It made me nervous as the summer went on, I decided to quick smoking cold turkey September 22. I smoked for 20 years. The quitting went well. About a month later I was more dizzy. The doctor blew it off, along with my heart burn, tingly toes and fingers and intermittent diarrhea. After a second visit he put me on a antibiotic for a "possible ear infection". Then thing became worse: sever dizziness, ear pressure and tinnitus. I also had non stop diarrhea. I should have never takin the amoxiciline. My fiancée sent me to the emergency room, that doctor ordered a MRI, visit to a ENT and neurologist. What happened! I was healthy maybe a lite overweight 2 months before this.

We'll my primary doctor did not like me going to the other doctors and stated you are perfectly healthy and maybe had the start of meniers.

Neurologist suggested B12 deficiency. Turns out my dad has this and gets shoots. Not the answer for me my B12 is fine. Each appointments is one month away.

ENT and audiologist. Dizzy chair test and ear tests revealed nothing. They do think it is inner ear related.

I found one guy posting about dizziness much like mine and after six months it turned out to be celiac. I read the Mayo clinic symptoms and it mentioned: Nervous system injury, including numbness and tingling in the feet and hands, and possible problems with balance. I also have some rashes on my butt, elbow and shoulder. The rashes aren't supper bad or supper itchy. My teeth are dis colored which is mention on the university of chicagos web site.

I have cut gluten out of my diet. Maybe a bad move before it can get in to a gastro doctor. I did not want to wait because I have been dizzy for 3 months now and want relief ASAP so I can help my family and play more with the kids. After being gluten free I might have some slight improvement in my dizziness, brain fog has improved greatly, heart burn gone, stomach still very burrpy at times. I have lost about 22 lbs since mid October (lucky it have some pounds to spare). I do eat and never go feeling hungry.

Does anyone know how long it would take the dizziness to get better? Any thoughts on this story?

Thanks and happy new year

 

Jonvon,

 

Check out this site for information / research papers of Dr. Marios Hadjivassilliou, a U.K. neurologist and the leading expert on Gluten Ataxia.  https://sites.google.com/site/jccglutenfree/

 

After being diagnosed with gluten ataxia a few years ago, my vertigo took months to resolve on a strict gluten free diet (i.e. I don't eat any 'gluten free' products at all and stick to eating vegetables, legumes, fruit and some fish).  The brain fog slowly disappeared as well.  After about a year I felt 'normal' for the most part but still have seizures and/or vertigo if I inadvertently get glutened.

 

It's not a quick fix (sorry!) and Dr. Hadjivassilliou recommends to be very strict in what you eat as it appears by the research that gluten ataxia/neuro people are extremely sensitive to the lower amounts of gluten that can be found in 'gluten free' products.

 

Please note that if you do have gluten ataxia and got a celiac test done, it will most likely be negative as gluten ataxia actually involves a different enzyme than what the traditional celiac panel tests for.  The celiac panels only test for ttg 3 and ttg 2. (ttg is Tissue Transglutimanase enzyme) Gluten ataxia is caused by an antibody reaction to ttg 6.  There are tests being developed by Dr. Hadjivassilliou but they are not on the market yet.

 

The best indicator at this point if you have gluten ataxia is to go gluten free and if the symptoms resolve chances are you have it.

 

Take care,

Kamma

PS - Prior to getting my diagnose, I went through three years of increasing dizziness/vertigo, stumbling, falling/walking like a drunk and seizures. The neurologist kept sending me to all these other experts for testing which included the ENT/Vesitibular Testing which came back normal.  

0

Share this post


Link to post
Share on other sites

Hi, All,

 

I have not been on this system for some time...basically it is due to such unusual changes, I still find it difficult to understand.  I was diagnosed through Hematology for Celiac Disease (latent) 3 years ago, became gluten free and so many things got better!  My liver enzymes became normal again, my frozen shoulder was painless again, and I lost weight which I needed to lose.  However...I have learned that lesson of having one autoimmune diagnosis can lead to more....

 

I developed tinnitus in my left ear over 12 years ago, met with an ENT who did some tests in his office with the "fork tuning" and a few other types, and then he ordered an MRI because he said I may have a brain tumor called Acoustic Neuroma.  I bought a copy of that MRI from the hosptial and kept it...there was no tumor, but I was concerned.  Glad I did!  This I will add to another topic.

 

My most recent experience took me to the Mayo Clinic and I wanted to give you this information I have thus far concerning my tinnitus and vertigo:

 

Problem List

Condition

Effective Dates

Status

Health Status

Informant

Loss Hearing Mixed Conduct Sensorineural(Confirmed)

 

Active

   

Allergies, Adverse Reactions, Alerts

Substance

Reaction

Severity

Status

Glutens

Arthritic pain

Severe

Active

 

This is not going to go away according to my Neuro-Surgeon and neurologist.  Not even being gluten free will/has changed this.  They suggested possible hearing aids to assist, but I have far too many other concerns right now...this will keep in pending.  I deal with my most debillitating time to sleep at night by having my husband turn the TV on with sound...and then I can fall asleep.  Other than that, I have become used to this and from time to time it will vary in intensity.  Take care all, will post on another topic for what is going on regarding other immune system problems.  Gladgirl

0

Share this post


Link to post
Share on other sites

Dizziness/vertigo/imbalance can be such a difficult thing to live with but what interests me is that judging by the websites devoted to the subject it is a problem that blights the lives of many non-celiacs and often there is no formal diagnosis made - or after a while, a different diagnosis is given.

 

My problems started in July three months into the gluten-free diet.  It is strange but when I  mentioned these feelings to various healthcare professionals as possibly having something to do with celiac no one has ever really pursued that tack.  However when in October I started to get tinnitus in one ear, and a feeling of fullness in both, I was referred to an ENT who did lots of tests and thought that as I was encountering feelings of imbalance since July, when I also picked up something too heavy and hurt my neck and lower back, that it could be a problem with my neck rather than my ears.  A follow up MRI scan of my head was fine, but one of my neck revealed bulging discs and a thyroid problem, so perhaps the problems are in my neck after all.    The tinnitus has almost gone now - but I am glad that I had it if it meant I could have the investigations to rule out other things.

 

My question is - if one has ataxia, would it necessarily shown up on my MRI scan of my brain?

0

Share this post


Link to post
Share on other sites

Hi Christiana

 

Gluten Ataxia only shows up in some people's MRI as shrinkage of the cerebellum region in the brain.  I say some people because if the ataxia is caught soon enough, there is no shrinkage of the cerebellum.

 

I'm not sure if there is a different set of protocols that Neuroimagers use in setting up the MRI for suspected different diseases.  For example, in a suspected cause of multiple sclerosis, the MRI is set to scan only those probable areas of the brain where multiple sclerosis leaves lesions.

 

Kamma

0

Share this post


Link to post
Share on other sites

Hi Christiana

 

Gluten Ataxia only shows up in some people's MRI as shrinkage of the cerebellum region in the brain.  I say some people because if the ataxia is caught soon enough, there is no shrinkage of the cerebellum.

 

I'm not sure if there is a different set of protocols that Neuroimagers use in setting up the MRI for suspected different diseases.  For example, in a suspected cause of multiple sclerosis, the MRI is set to scan only those probable areas of the brain where multiple sclerosis leaves lesions.

 

Kamma

Thanks for that Kamma - that is v. helpful.

0

Share this post


Link to post
Share on other sites

Hi Christiana

 

Gluten Ataxia only shows up in some people's MRI as shrinkage of the cerebellum region in the brain.  I say some people because if the ataxia is caught soon enough, there is no shrinkage of the cerebellum.

 

I'm not sure if there is a different set of protocols that Neuroimagers use in setting up the MRI for suspected different diseases.  For example, in a suspected cause of multiple sclerosis, the MRI is set to scan only those probable areas of the brain where multiple sclerosis leaves lesions.

 

Kamma

Hi, Kamma,

I thought I would send some notes from my neuro surgeon that approaches the protocol of my own new MRI...his concerns were as follows:

 

ASSESSMENT AND PLAN

My impression is that Mrs. Pfeiffer is a 61-year-old female with a left

temporal lesion. I cannot differentiate at this point a brain tumor, primary

or metastatic, versus cavernous malformation that is less likely.

The tumor seems to have a dural-based component, but it is very worrisome the T2

abnormalities surrounding the mass. The plan is to repeat an MRI of the head

with gadolinium with T1 stealth sequence and also GRE. We will make further

recommendations after the MRI. I discussed all this with Mrs. Pfeiffer. She

understood and agreed to proceed with the plan. I am also providing her a

prescription for levetiracetam generic per her request. Her insurance

company does not cover Keppra. Once again, I appreciate the opportunity to

participate in the care of the patient very much.

 

His further comments were also related to stating my cerebellum was unaffected.  So there are certain pieces as you indicated that the protocol is specific to certain types of MRI's.  Thanks for being here.  

0

Share this post


Link to post
Share on other sites

Hi Gladgirl,

 

Here are a couple threads that talk about UBO's or unidentified bright objects.

 

 

Ubo's, Epilepsy And Celiac

http://www.celiac.com/gluten-free/topic/20198-ubos-epilepsy-and-celiac/?hl=%2Bunidentified+%2Bbright+%2Bobject

 

Okay So Now I'm Mad At Them

http://www.celiac.com/gluten-free/topic/33798-okay-so-now-im-mad-at-them/page-3?hl=%2Bunidentified+%2Bbright+%2Bobject#entry367552

 

Dr Hadjivassiliou is a leading researcher on brain issues related to celiac and gluten.  Your doctor might get some info by contacting him about recent research he has done.

 

Search for Hadjivassiliou

http://www.celiac.com/gluten-free/index.php?app=core&module=search&section=search&do=search&fromsearch=1

0

Share this post


Link to post
Share on other sites

 

 

Hi, Kamma,

I thought I would send some notes from my neuro surgeon that approaches the protocol of my own new MRI...his concerns were as follows:

 

ASSESSMENT AND PLAN

My impression is that Mrs. Pfeiffer is a 61-year-old female with a left

temporal lesion. I cannot differentiate at this point a brain tumor, primary

or metastatic, versus cavernous malformation that is less likely.

The tumor seems to have a dural-based component, but it is very worrisome the T2

abnormalities surrounding the mass. The plan is to repeat an MRI of the head

with gadolinium with T1 stealth sequence and also GRE. We will make further

recommendations after the MRI. I discussed all this with Mrs. Pfeiffer. She

understood and agreed to proceed with the plan. I am also providing her a

prescription for levetiracetam generic per her request. Her insurance

company does not cover Keppra. Once again, I appreciate the opportunity to

participate in the care of the patient very much.

 

His further comments were also related to stating my cerebellum was unaffected.  So there are certain pieces as you indicated that the protocol is specific to certain types of MRI's.  Thanks for being here.  

 

You're welcome, Gladgirl. 

 

When do you go in for your next MRI?

 

I also have a brain tumour in the pituitary/optic chiasm called a craniopharyngioma.  Slow growing.  At this point they don't want to operate as the symptoms are far more preferable to the excision.  

 

Kamma

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,118
    • Total Posts
      919,455
  • Topics

  • Posts

    • Hi Anns and welcome   Do you think that I am on the right course to see if I possibly have Celiac?   Yes, it was smart of you to consider the possibility and its good that you've had the tests. Both the aneamia and bloating are symptoms, although of course they may be unrelated. Best way to find out is to check as you are doing.   Can this develope later in life ( I'm 46)?   Yes, I think its most common discovered later rather than sooner.   I ate a meal last night that was gluten free and did not feel like nearly as bloated after eating, would I notice a change that quickly?  Thanksort for your input.   Yes, I noticed far less of a heavy feeling after eating very soon after diet changes. However you would be better off not trying gluten free just yet. I collected some links and other stuff here, it may be of use: Your best bet is to eat as normal and wait for the test results. If your doctors eliminate celiac there's nothing to stop you excluding gluten at that point to see if it helps. But before then you need to keep eating it to ensure an accurate diagnosis.  All the best  
    • Well HIV undermines the entire immune system as I understand it, so that would be akin to using dynamite to put out a kitchen fire! There is some work going on to try and retrain the immune system to not see gluten as a threat though: http://www.immusant.com/docs/ImmusanT DDW Data Release FINAL 5.24.16.pdf  I'm laughing as I write this imagining the conversations you could have with people as you tell them you'd like to contract HIV so that you can eat a decent sandwich        
    • So, I have just yesterday had blood work done to test for Celiac so I am waiting on my results.  This was prompted when my Dr discovered that I was severely anemic and after other testing sent me to  Hematology.  I actually inquired if I could possibly have a gluten sensitive because of the anemia (which has improved with an iron supplement) and feeling bloated after eating and well most of the time actually and after some research I found that this could be a sign that of a gluten sensitivity.   The Hematology Dr also recommend an upper GI.  Do you think that I am on the right course to see if I possibly have Celiac?  Can this develope later in life ( I'm 46)?  I ate a meal last night that was gluten free and did not feel like nearly as bloated after eating, would I notice a change that quickly?  Thanksort for your input.   ANN
    • Yes, the first time you use gluten free flours, it feels like a challenge. ... of a gluten-free living after her elder kid was diagnosed with Celiac Disease. View the full article
    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,159
    • Most Online
      1,763

    Newest Member
    Anns
    Joined