Soooo....

[KatieAgain]

Tomorrow I am having a TY infusion low grade fever or not. Good.

I am still JCV-. Really Good.

I am deficient in Vitamin D again. Can be fixed.

I am so deficient in Iron (they drew more blood for more tests) that I have to have it infused in the Cancer Center with my doctor present...it is a long infusion that apparently needs constant monitoring. I will be having a physical afterwards as well. But that has to wait until next week. Have to wait a few days after TY.

Thyroid is probably toast...but we are waiting for the Endocrine Panel to come back. We are guessing if the thyroid is zapped, it was probably the TY. But, this can also be fixed.

They took me off one of my meds...a concern it is contributing to the problems. My allergy med is going to be changed as well, but at a later date.

Kidneys and Liver are awesome! That was good news.

Lots of doctors appointments. But you know what? Honestly...it's all good...because I am not having an MS Flare...and as long as I am not having a flare and can have my TY infusions, I can muddle through the rest. I am just grateful that I can walk and see...which was not the case last year.

[DebbieB]

Katie, you have a wonderful outlook and are so positive. I'm sorry you have so many challenges - but despite them all, maintain your allegiance to TY.

You should be a spokesperson for Ty...

You are an amazing woman! Keep the faith!

[lindaincolorado]

Hi Katie, I hope the infusion went well and that everything else gets taken care of easily
You go girl

[KatieAgain]

Thanks to both of you! I indeed had number 6 yesterday...and believe it or not...it made me feel better.

The Nurses told me the Iron Infusion next week will make me feel all sorts of wonderful.

[bree2013]

Thanks to both of you! I indeed had number 6 yesterday...and believe it or not...it made me feel better.

The Nurses told me the Iron Infusion next week will make me feel all sorts of wonderful.

So glad to hear Katie!

Bree

[KatieAgain]

So glad to hear Katie!

Bree

Thanks Bree.

My youngest is in Ohio...I hope y'all are staying warm. He has been telling me about all the bad weather.

[bree2013]

Thanks Bree.
My youngest is in Ohio...I hope y'all are staying warm. He has been telling me about all the bad weather.

Katie - Yes, it's been a record breaking winter. Early last month we surpassed all of last winter's snow fall by about two feet! Honestly, it's not so much the snow as the bitter cold -- and that darn Phil had to go and see his shadow

Keep warm everyone!
Bree

[pennstater]

Katie,

Glad to hear Ty was a go. Sounds like you are in great medical hands. Good luck with the Vitamin D.

[Katje]

what kind of Vit D do you take> My neuro prescribed D2, but I heard D3 is better.

[KatieAgain]

what kind of Vit D do you take> My neuro prescribed D2, but I heard D3 is better.

I take both prescription strength D2 and OTC D3.

Prior to Tysabri I was taking 135,000 IUs a week...just to keep it a a very low normal (41). 100,000 units of D2 and 35,000 units of D3. If I did not take that much I was in single digits.

Once I started Tysabri, my internal Vitamin D switch turned on and my D level shot up to over 250. That is considered toxic, but I honestly have never felt better, and I did not experience signs of toxicity.

I was taken off Vitamin D for a couple months...and I bottomed out. I am currently back on 50,000 D2 and and 35,000 D3.

I could not tell you which is better because I take both. That is probably the key...both. But the goal is to keep me between 80-120.

For the lurkers reading this, I DO NOT recommend supplementing your Vitamin D to the levels I have without your doctors guidance and supervision.

[Katje]

Thats interesting your levels went up after starting Ty.

[hobbit]

Inspirational

I truly would have gotten off this boat if not for the inspiration on this board! Good luck to you, Kate.

My first infusion was suppose to be today. The infusion site cancelled and is absolutely unresponsive, not only to me but to Active Source as well. So, now I get to move to a different infusion site and hopefully the paper trail will follow. Still hoping to get started this week.

Peace,
Anna

[lindaincolorado]

YEA Katie I take 4,000 units of vit D3 daily and it works for me and my levels

hobbit, so sorry about the infusion center I was a snowbird CO - AZ and my paperwork was kept up by Active Source-my case manager was excellent ! I hope you get in asap to a great infusion center.

[KatieAgain]

Thats interesting your levels went up after starting Ty.

It is interesting. It's remarkable actually. For years I had been supplementing with 50,000 IUs and I would still bottom out. My lowest level has been a 2.

Was it the TY? Yes, I think it probably was.