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MicheleM

Vitamin D

7 posts in this topic

It has been ages since I last posted ...  I found out almost a year ago that I was deficient in "D" rating a 23 whereas normal was between 40-50 on the blood test my doctor used. I started taking 50,000 icu per week but found that by day 4 I was as lethargic as before taking it. So we upped the dose to 2 x a week, 100,000 units per week. Seems to be helping with the energy levels. Just thought I'd throw that little tidbit of info out for anyone who hasn't been tested yet or has been tested and thinks the vitamin D is not making a difference. Could be if it isn't making a difference the supplement is not great enough.

Here's another thing I've learned (the hard way of course) since last posting. Sclero can and did affect the "cardiac" muscles in the body. Not just the heart has cardiac muscles, we have many sphincters in our bodies that allow the body to function. For me it was my Sphincter of Odi which is located at the base of the common bile duct (pancreas/liver) that was the issue. The pain is incredible, nothing really to compare it to as it can be short lived or last for days. I had had a procedure last June to open the muscle by cutting it since it had tightened and basically closed not allowing the pancreas/liver to dump the enzymes into the small intestine for digestion. It seemed to work, but by December I was experiencing severe pains again and knew what that meant: the procedure didn't work.

By February of this year the entire muscle had closed and surgery was my last resort. I had the surgery and am still recovering from it. The condition is called Sphincter of Odi Dysfunction (or SOD). If anyone out there is having heart attack or gallbladder attack like symptoms, but the heart is healthy and you don't have a gallbladder, please have your GI investigate this as a potential problem. The sclero did it's nasty job and almost closed my muscle completely by the time of surgery -- not a good thing for sure! If the enzymes cannot get out of their organs many bad things can happen and happen quickly. I'm sorry I didn't think to put this out there sooner, but it's been a rough go. The surgery to fix this problem is like going back in time to the 1970's where they cut you from stem to stern and move everything out of the way and then you get to heal from it. Which in turn means put me into major flare along with all sorts of fun stuff.

I'm now finally able to walk without pain in my gut, and that's the best thing to do with upper abdominal surgery. The sclero flare, well it is what it is. I'm really doing good considering. Don't know if I'll be able to go back to work after all this is said and done as stress does cause pain in the area. We're talking disability, but I just can't seem to go there in my head just yet.

Know I do think of everyone and I do hope you're having good days. We are all affected differently by this disease that connects us and everyday I think of everyone else who suffers.

Thinking of you and hoping for good things to be happening in your lives! xo


Soft hugs your way,

 

Michele

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Hello Michele

 

Good to hear from you again but I am sorry it's been such a difficult time for you, what a lot to go through. I hope you continue to heal and recover.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Michele,

Wow, you sure have been through a lot! Thank you for explaining Sphincter of Odi (SOD) as I had never heard of it before.

Here's many warm hugs and some flowers in hopes things settle down a bit for you, Michele. :emoticon-hug: :flowers:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Michele

 

Welcome back, it has been a long time! Sorry to hear you've had it so rough...really good of you to share that information for all though...so many things affect others.

 

Good luck with your recovery...hope you can keep us updated on how you are doing from time to time now! :flowers:


Sending good wishes your way!

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Thanks all for the kind words. Shelley ---  I'm really curious as to how many others are in the same situation with the low levels of Vitamin D and how much they take per day/week to help combat the low levels. Everyday is a new one and hope is always a part of that! I'll try to be better at posting. smile.gif xo

Michele


Soft hugs your way,

 

Michele

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Hi Michelle,

 

That was a great post, but I'm sorry you had to learn all that through personal experience. (I would have thought the Sphincter of Odi was just my dad being rude about my grandmother's Norwegian cousin!) How did they diagnose it other than the pain? Could they check the enzyme levels via a blood test or by ultrasound?

 

The surgery sounds horrible~ Do the doctors think this is a permanent fix? Just take it easy - no mowing lawns or doing abdominal crunches with the TV exercise folks! :rolleyes:

 

 

If you find you'd really be better off going on disability, just think of it as another medication - something to help keep you healthy and posting for a long, long time to come.

 

Best wishes for speedy healing and a very gentle hug,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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MicheleM,

Sorry to hear you have had such a hard time of it. I never heard of your problem before and hope you have a full recovery.

 

As far as vitamin D, when I was on dialysis my level was low so they gave me it through the dialysis machine. When I saw my Scleroderma specialist last month she said I should be taking between 400 and 800 units a day. I checked with my nephrologist and even though my D level was in the normal range he told me to take 800 units a day. I have been doing so but haven't noticed any effect from it.

 

miocean


ISN Artist

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