Need Help With A Newspaper Submission. . ..

[elye]

I've come to all of you smart friends, as I have so successfully done before, for some information.

I've been watching and listening with great interest to recent news reports dealing with the "Liberation Treatment", a controversial medical procedure used in the treatment of multiple sclerosis that involves angioplasty to unblock veins in the neck. The story is all over the news here in Canada, as the federal and provincial governments face much pressure to start funding studies on the efficacy of this approach. Lately there have been many Canadians who have spent thousands and thousands of dollars to get themselves to Poland and Bulgaria for this treatment. Some have had improvement of MS symptoms, some have not. Many still have the cognitive difficulties, the fatigue, join and muscle pain, ataxia, depression, myelopathy. . . . . . ....and on and on....

As I have watched the documentaries on TV and read about these people, I find myself with a knot in my stomach, always thinking, "Dear gawd. .. . ...... . .it often takes eleven years or more to rightfully diagnose gluten intolerance/celiac disease, and we'll never know how many individuals were never diagnosed, or were misdiagnosed with something else, and ended up dying from complications of gluten trouble".

I want to strike when the iron is hot -- this subject is being talked about around many water coolers right now. So, I am going to write an editorial and submit it to our local newspaper, hoping to reach people who have MS or know someone who does and inform them about celiac disease, how symptoms can mimic many conditions and how testing is easily done.

I would love to hear from celiacs here who have been misdiagnosed with MS, who had symptoms lessen or disappear with a gluten-free diet and therefore concluded that the cause of their illness is gluten. I will mention this forum in my piece if there is great response, as there is nothing more powerful than reading real voices!

[ravenwoodglass]

I was thought to have MS for a long time. Both because of my symptoms and because the UBO white lesions are similiar to the lesions found in MS. Mine were in the wrong place but it wasn't until I had a spinal tap done that they firmly ruled out MS. Ms lesions will throw debris specific to the demylinating process into the spinal fluid. UBOs don't. Unfortunately some doctors will diagnose MS based on the MRI lesions and symptoms but not do the spinal tap. As the spinal tap, although an easy procedure in itself, can lead to the worst headache one can ever experience that can scare folks off from the procedure. IMHO spinals should always be done on an inpatient basis to avoid this but they are often now, as mine was, done on an outpatient basis. This means that the person will be upright and the headache will occur as to avoid that the patient needs to be totally flat for a day. My advice is to have anyone who has not be conclusively diagnosed by spinal to be sure to have celiac screening and a trial of the diet. It did take several months for my MS like symptoms to resolve.

[elye]

Thanks for this, Raven. I've read your posts through the last few years and marvelled at how you have managed to get through such tough times brought on by misdiagnosis.

I did a forum search and have found a couple of threads on the MS-celiac connection, but they are three and four years old. I was hoping to get a fair amount of current responses. I've been to many of our local celiac association meetings, and in the last couple of years I have spoken to FOUR people there who were misdiagnosed with MS, were on expensive meds with side-effects, and long story short, started eating gluten-free and their symptoms eventually disappeared and have not come back. Incredible - - and this was just in the last two years.. . . . . ...I cannot help but wonder how many people would have told me this story if I'd been attending these functions for ten or twenty years!

[jester]

Hm. I'm being tested for celiac disease within the next two months and I'm actually telling my mom to get tested too because she has much of the same problems I do - and she has MS. So we'll see.

[SGWhiskers]

MS was the first working diagnosis I had. I then went on to have 9 different diagnosis over 4 years. After feeling I wasn't beeing taken seriously by my primary physician, I switched doctors and was tested on the first visit for Celiac. Bingo. After 2 years strictly gluten free, most of the neurologic symptoms have improved, but are not gone. I suspect permanent damage has been done but life is more manageable now.