Anemia after CCSVI procedure

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

Postby Brynn » Fri Feb 19, 2010 6:38 pm

Hi Rhonda, yoour anemia is interesting.....I think that Erika is dealing with that right now, too. What type of iron supplements are you taking? I will keep that in mind if a become fatigued...I hope not because the last time I took iron supplements it gave me bad gas!! :( Today, I have had my strongest day so far! :D :D And that's even with my physical therapy this morning! It is so exciting! I certainly have had some ups and downs as I rebuild my strength but it's dinnertime now and I have been strong and UNASSISTED all day! Yeah! :D Bye, Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby magoo » Sat Feb 20, 2010 8:01 am

I'm taking Hemocite. I'm drinking some herbal tea to help with the "side effects" and it seems to be helping:)
I am thrilled to hear about your strongest day so far!!!!!!!! I know how amazing it is when you get through a pretty challenging day and realize you still feel good. It's huge! I lived for so long with days like that sending me down for the count. I know you will continue to get stronger each day.
I didn't know Erika was dealing with anemia too. I'll have to look for her post. We have to be aware that the blood thinners can have some risks and watch out for the signs.
Thursday is my big testing day, 8O, the prep sounds like a blast, NOT! :roll:
Take Care!!!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby ErikaSlovakia » Sat Feb 20, 2010 10:14 am

Brynn wrote:Hi Rhonda, yoour anemia is interesting.....I think that Erika is dealing with that right now, too. What type of iron supplements are you taking? I will keep that in mind if a become fatigued...I hope not because the last time I took iron supplements it gave me bad gas!! :( Today, I have had my strongest day so far! :D :D And that's even with my physical therapy this morning! It is so exciting! I certainly have had some ups and downs as I rebuild my strength but it's dinnertime now and I have been strong and UNASSISTED all day! Yeah! :D Bye, Brynn

Yes, but in my case it was not because of the procedure or heparin. It is old problem. I have had these symptoms for 6 years at least.
Nobody has checked my Ferritin levels so far. The check only iron and it was always fine.
As I study more about iron, Ferritin and Transferin so it was me who asked my doctor to do the test for Ferritin and Transferin as well.
I exercise less and I feel like the first 33 days regarding fatigue, it means I feel may be only 15% of fatigue so I feel better again.
I take ferrosi sulfas pills twice a day. My hematologist needs to do more tests and she told me my doctors will have to check my ferritin in the future more often.
I was never on low iron diet.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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hopefully some helpful info

Postby Ruthless67 » Sun Feb 21, 2010 11:21 am

Hi Erika and Rhonda,

I find it interesting that you both have anemia. http://www.thisisms.com/ftopic-8640-255.html and http://www.thisisms.com/ftopic-10184-0.html

I try to eat quinoa every morning for breakfast and include it in my lunch & dinner. It’s a SUPER food. If you aren’t familiar with it, here’s a link to it’s nutritional analysis.
http://www.nutritiondata.com/facts/cere ... ta/10352/2

I had been following the Swank Diet myself since diagnosed in 1992 and attribute that to my very slow MS symptoms progression. But since 2008 I’ve been following the “Healing MS, Diet, Detox & Nutritional Makeover for Total Recovery” by Ann Boroch and I’m feeling soooooooo much better. I keep Ann appraised of the advances in CCSVI as she has shown an interest in it and she even wrote about it in her December 2009 Newsletter and attached a link to the CTV special on CCSVI. Way to go Ann!! Here’s contact info. http://www.annboroch.com phone (818) 763-8282 She is very accessible and knowledgeable about MS & nutrition.

Then last year just for fun, lol, I added in “The Sugar Addict’s Total Recovery Program” by Kathleen DeMaisons and again, I’m even better! A lot of issues have cleared up and I’ve also dropped 50 pounds as my only “side effect”!! I’d say that’s not so bad. Well, that and sobriety, as alcohol = sugar :wink: Had to say goodby to nightly cocktail hour.

When I was looking up the web site for the Quinoa analysis I pulled up this web site as well and found it interesting. I haven’t read it all, but a little ways down on the blog under Day 18 of Detox, she speaks about Quinoa and how she likes to prepare and eat it. And a little further down under the Day 17 of Detox, she speaks about her low Ferrin levels and how she addresses that through diet. It’s an interesting read and even though I’m not very far into it yet, I soon will be. She thinks like I do about the food choices we make every day. Garbage in, Garbage out!
http://womansguidetovitality.blogspot.com/

Maybe you’ll find some of this info helpful.

Respectfully,

Lora
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Postby magoo » Fri Feb 26, 2010 11:56 am

Lora~Thanks for all of the great info. You have some awesome willpower to follow those diets, and I'm super happy they are making you feel better!
I have to say giving up the nightly cocktail would be tough! LOL

:D As for me, my tests were normal. So there is no bleed causing my anemia. They will be testing for a couple of other things including Celiac. Dr. Dake said I could come off of the Plavix and I'm excited!
I am feeling really good again and have started a big bathroom remodeling project...what am I crazy????
I have to tell you all, Dr. Dake is amazing! He is the most caring and conscientious doctor I have ever had. I am sick about the way he's been treated by the neurology dept. at Stanford and I hope he will get the chance to prove them wrong. I hope more people with MS will have access to his wonderful care again really soon.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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