neuro comments

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby kirch86 » Sat Mar 13, 2010 2:31 am

Thanks for the many replies. Like I said before, there is a lot of really good info and people willing to help out here. For as long as we have been together (2 years on sunday) she had always thrown up a lot. Usually at least once every 2 weeks. I always tried to get her to get allergy tested and she never would. She started getting abdomen pain and she thought she was having galbladder issues. We went to the gastro dr and went through a bunch of testing. They did an upper scope to rule out ulcers and that is where they found slight swelling and a little damage to the villi. The dr. said it looked like it might be celiac however the biopsy wasn't 100% consistant with celiac. They did the bloodwork (i'm not exactly sure what they checked) and they said that prooved celiac. The gastro said her villi showed some damage, however it wasn't really that bad and they weren't completely flattened out. We adjusted her diet and after about 3 weeks the abdomen pain went away and since then she hasn't puked. I know ppl have different sensitivity levels to gluten. I know this isn't the right way to necessairly go about it, but we do our best to read the labels avoid the obvious gluten sources. The funny thing is the abdomen pain went strait to the dizzyness without any period of feeling "normal". I urge her to take every percaution however, I am not the one who is sick and try to be sympathetic.

She has had a lot of bloodwork done in the last couple of weeks, I am not sure what all, but the last time after being diagnosed with ms, they took 8 tubes from her. I looked at her scans with the dr last week and she has one lesion on the brain scan, multiple on the spine, and one on the lower spine. (sorry I can't remember the medical terms for the scans) The neuro didn't have an exact number and location for the lesions.

Since getting diagnosed with celiac, she hasn't been eating any more legumes, however she has been eating a lot more dairy products, IE yougurt, cereal ect.

She gets overwhelmed with all of this stuff and really hasn't even searched any of this stuff online. She really doesn't even like to look at this stuff when I show it to her. She expecially had a hard time when I start talking about CCSVI. This last year has been a huge roller coaster for her, getting engaged, diagnosed with celiac, being extremely dizzy, getting told there is nothing wrong with her numbness, getting told she had a stroke. finding out she didn't have a stroke, but it was a lesion that she has ms and she will have to get an injection every day, She was just trying to come to grips with the fact that she has a life long disease and then I throw another loop into the coaster and tell her that there might be a cure for it but it is not proven yet. All of this jut kills me inside, but just try to research ms, be there for her and help her out as much as I can without being overbearing.

The more I read about CCSVI the more excited I get about it. I hope and pray just as all of you do that this is the answer and gains quick acceptance. But I kind of feel like this is all just a little too much too soon. I think I will let her get settled in with her meds and kind of "let the waters calm" so to speak before I try to talk to her about CCSVI again.

Once again. Thanks for all of your support. I find it truly amazing how wonderful, knowledgable, and willing to help everyone is here!!!
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Postby mshusband » Sat Mar 13, 2010 1:23 pm

Kirch86 - check your private messages ...
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