Are we taking DMDs after CCSVI repair?

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Are we taking DMDs after CCSVI repair?

Postby 6mary6 » Tue Dec 10, 2013 11:06 am

Sorry, I don't know what to do! I'm new here and I will read everything. My Neurologist doesn't even want to talk about CCSVI, and is pushing Gilenya.
I had my CCSVI repaired in 2011. I feel great and I get a new MRI next week.
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Re: Are we taking DMDs after CCSVI repair?

Postby lyndacarol » Tue Dec 10, 2013 11:45 am

6mary6 wrote:Sorry, I don't know what to do! I'm new here and I will read everything. My Neurologist doesn't even want to talk about CCSVI, and is pushing Gilenya.
I had my CCSVI repaired in 2011. I feel great and I get a new MRI next week.

Welcome to ThisIsMS, 6mary6. You have found a supportive community of understanding friends; we are glad you have found us. There is lots of good information here to read; as questions come to you, ask away… we don't have all the answers, but we have many unique experiences and opinions we are willing to share.

From your post, I assume you are in the early stages of the relationship with your neurologist. I hope you took an actual list of your symptoms to discuss with him at your first meeting; I hope his neuro exam compared favorably with these suggestions from the University of Chicago:

http://peripheralneuropathycenter.uchic ... #bloodtest


I think this section on blood tests is especially important:

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels (Additional tests for zinc, magnesium, copper, and vitamin D are also recommended jimmylegs, here at TIMS.)
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
Vasculitis evaluation
Oral glucose tolerance test (Additionally, I suggest a "fasting blood insulin test" – NOT the same as a blood sugar/glucose test.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (In addition, I suggest a mannitol-lactulose test for Intestinal Permeability.)
Lyme disease
HIV/AIDS
Hepatitis C and B

Please find the Introductions forum and tell us a little bit about yourself, Mary. We look forward to getting to know you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Are we taking DMDs after CCSVI repair?

Postby NHE » Tue Dec 10, 2013 1:41 pm

6mary6 wrote:Sorry, I don't know what to do! I'm new here and I will read everything. My Neurologist doesn't even want to talk about CCSVI, and is pushing Gilenya.
I had my CCSVI repaired in 2011. I feel great and I get a new MRI next week.


Hi Mary,
Welcome to ThisIsMS. You may get a better response to your question by posting it to the CCSVI forum.
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/

By the way, I look forward to hearing about your MRI results. In addition, have you had follow-up care for your CCSVI treatment? Has it shown that you still have good blood flow in your veins?
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Re: Are we taking DMDs after CCSVI repair?

Postby lyndacarol » Tue Dec 10, 2013 2:15 pm

6mary6 wrote:Sorry, I don't know what to do! I'm new here and I will read everything. My Neurologist doesn't even want to talk about CCSVI, and is pushing Gilenya.
I had my CCSVI repaired in 2011. I feel great and I get a new MRI next week.

I apologize – I missed the fact that you have had CCSVI work done in 2011. NHE directed you to the appropriate forum.
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Re: Are we taking DMDs after CCSVI repair?

Postby centenarian100 » Sun Mar 09, 2014 12:32 pm

Presumably, you had the liberation treatment because you think multiple sclerosis is a vascular disease, not an autoimmune disease, so why would you take gilenya?

Or do you think MS is both a vascular and autoimmune disease?
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