MRI finding of demyelination

[Chrisbo]

I am 44 & male who was always fit/healthy until 9 mths ago when I became drowsy

I then had:
Lightheadedness
Cloudy Head Sensation(Temp Relieved with sport)
Migraine
Left Eye Sore
Left Arm/Foot stinging/pins & needle sensation
Runny Nose
Tiredness
Loss of Appetite & weight loss

Symptoms now:
Migraine w aura
Constant Tiredness
Runny nose after sleep
General unwell feeling

Blood tests showed elevated IGA Gliadin Antibodies

An MRI/MRA showed:
There are multiple varying sized deep white matter & subcortical foci of high signal intensity.  There is a focus in the right temporal lobe. On sagittal FLAIR image SL11 there are several pericallosal lesions but

[smsmith18]

Hello! Almost a year ago exactly I had the same finding on my MRI. Findings of demyelination possibly realted to a demyelinating disease such as MS. I originally went to my PCP because I was having some weird sensations of numbness and tingling in my tongue and ... beleive it or not ... teeth. Anyway, after having an MRI(+) and a spinal tap(-) and being told by my neurologist that she suspected a positive finding. I gave up. I decided to wait it out and see what happened. So, shortly after my symptoms went away completely. Now a year later they have returned. They are the same intensity and same frequency. They are unpredictable and impossible to track. I just don't want to go back to the doctor. That spinal tap was the worst experience of my life and I havn't been to the doctor since for fear of tests! If anyone has had similar symptoms of numbness in the tongue, mainly just the tip. I would really be interested to hear from you. My email address is ***@****. Thank you.

Stephanie

[ClaireL]

Depending on where you live there are several companies specialising in bread/rolls/pies/pizza bases etc. Try Glutafin, Juvela, Schar and the one I use a lot called Lifestyle Healthcare. Cereals, providing they are rice or corn based are also ok and pasta is easily obtainable.  Take aways are a problem as you can never be sure of what is contained in the sauces. The Coeliac society in the UK is excellent so their web site may be worth looking at (www.coeliac.co.uk). Believe me, the diet really is not a problem. Even I as a non coeliac will sometimes switch to a gluten free diet for a period of time, as I actualy feel better when on it.

[Chrisbo]

Thanks for the comment.  I am certainly tempted to try a GF diet but I don't think it will be easy, particularly as I eat a lot of bread, breakfast cereals and pasta not to mention the occasional take-away !.  If I could see results in a few weeks then it certainly would be worth a try.

[ClaireL]

Dear chrisbo
just to let you know that a gluten free diet is a doddle and if that is what is causing your problem, you should be up and running within a month. My other half is also a very active sportsman (mainly squash), and suffered terribly with fatigue, weight loss and a host of other symptoms about 10 years back. He went on a gluten free diet with a massive boost of folic acid to increase his iron deficiency and within a month had regained over 6 kilos in weight, and was almost back to full fitness. He is nearly 50 now and still actively playing. He thought initially that a GF diet would be a disaster but the only problem we have is in fast foods. Just avoid them. Other than that if you eat healthily, none of the fresh foods contain gluten. Good luck, it's certainly worth a try and as chief chef in this house I am an expert!!

[Chrisbo]

Thanks for your reply and the pointer to Braintalk.  The gluten file cetainly contains some interesting information which I will have to look into more closely.  I didn't realise gluten could cause so many problems in some people.

[AMO]

Dear chrisbo~
hi again. I hopeyou feel better today. From my understandings you can be gluten sensitive (possible why you showings of the AGA) without being a full celiac (which would produce the pos EMA panel). I am not saying that is be cause to all you issuses but it would be something i would look farther to. No denying you are producing one type of antibody to gluten. Seems your body does not want it in your diet. Ihave been g/f for over a year and it sounds harder than it is, really. Like i said, gluten sesitivity i have read, without full celiac disease, has been a link to many different health issues other than the gastro type... migranes, seizures, irratiblity, depression, acne, menses problems, ataxia, just to name a few . There is a posting forum called Braintalk and has a whole folder to gluten and neuro problems. May be worth reading some.
Good luck with your doctors and i do hope you are well soon, keep faith:) amo

[Chrisbo]

I haven't tried a gluten free diet as my Dr believes it is very unlikely that I am gluten sensitive.  If I thought it would help then I would't hesitate to give it a go but it sounds like a big commitment to make with no guaranteed success.

[CCF-Neuro-M.D.-CS]

Without seeing you, examining you, and reviewing the films I cannot be of much help. Migraines can cause changes within the white mater. Perhaps obtaining a second clinical opinion would be reasonable. If you are in the area the Mellen Center for Multiple Sclerosis at the Cleveland Clinic is a wonderful place to obtain a definitive answer to your question. Good luck.

[Chrisbo]

Further to my original posting and thanks to the comments so far.

I have had many blood tests looking for all sorts of fatigue/headache/presyncope disorders with the only unusual finding being the mentioned elevated IGA Gliadin antibodies (more than double the accepted upper reference norm).  This is a pointer to Celiac as AMO mentioned but the more specific endomysial IGA antibody test for Celiac was negative.    I had these tests repeated on 3 separate occasions and each time the lab result came back the same with the conclusion that it is unlikely that I have Celiac and therefore I am not gluten sensitive.

The MRI finding was certainly a surprise to the Neurologist as he was initially thinking along the lines of recurrent migraines.  Since a child I have had mild migraines (with aura) but they seem to now be more frequent (2-3 per month) and longer lasting (1-2 days) and when the Neurologist mentioned the word 'MS' I obviously started to become very worried and concerned.  

I have now been prescribed propranolol as a preventative measure for the migraines but am reluctant to take them due to the possible side effects of dizziness and insomnia.  I seem to be always tired which is not relieved by sleep and given that I am still playing competitive sport (although not as effectively or as often) I cannot convince myself at this stage to take the beta blocker.

[kwag]

Have you tried to go on a gluten free diet?  It will probably take a year to clear it out of your body but it will be well worth it when you improve.

[AMO]

dear chrisbo~

Sorry you have been feeling punk and I hope today you are feeling better.

I am not certainly not a doctor but from what i gather alot of times there are no answers exactly what causes white matter lesions. And being a internet forum here the doctors prbably won't be able to be sepcific for you.
I have high elevated antigliadin antibodies (both Igg and Iga) without the gastro issuses. I get confused on the two as markers, but if i rememeber Igg points to celiac. I have found reference to celiac, crohns, and colitis and white matter lesions and demyelination. The gluetn intolerance  has been linked to MANY health issues
Not much to read but it struck me when i found it, wish i could point you in a link, but may have lost them.

I hope you find answers and try to not too much, we all know how stress is. Take care and i wish you luck
amo