Enough is Enough

[KatieAgain]

So...went jumping through hoops last week to get all my tests done so I can get my TY infusion on Friday. It all was so crazy.

Results still are not on the patient portal. I called and apparently they are tied up in my PCPs office. The staffer kindly told me they should be reviewed by the end of the week. I told her I had to have them for tomorrow so I could see one of my Specialists. She said maybe your Specialist could redo all the tests.

Tomorrow was the go/no go day for my infusion. No results. No infusion.

I officially give up. I am not fighting the Healthcare System. I just don't have the fight left in me...I am no longer the Warrior I once was famous for. No more TY for Katie...I am going to let them know I am pulling the plug tomorrow...I am so done.

[pennstater]

So sorry to hear. Can't your specialist call and ask the PCP for results to expedite it for you? I really get frustrated when the doctors pull us in the middle.

[DebbieB]

Katie, I'm so sorry....I know it's been a battle for you, especially over the past few months.

It's so difficult to continue to advocate for our own healthcare.

I respect your decision...just so sorry it came to this.
Debbie

[Thinkimjob]

You ARE woman, hear you roar!

Now that "maybe your specialist could redo all the tests you've just spent a week getting done" is enough to make a strong woman weep.
It's just so gobsmackingly stupid. And when it's like that it takes your breath away, and words fail you.

I recently had a neuro promise that if I drove five hours, had a MRI, etc he and his off-sider at another hospital would see me on the same day.
I get the reminder letters, the appointments are ten days apart.
But you promised! Like he cared.

Would it matter too much if you waited another week for the Ty? I know you really liked it and thought it was doing you a lot of good.

[Fed Up]

oooOOOHHH, KatieAgain; I wish I had no clue what you were talking about. I expect the medical system to get worse.

With the new healthcare system, it is taking me about 6 weeks to get Doc's appointments now. I think the system is overburdened.

One thing that aggravates me too; there seems to be no understanding and compassion for patients with MS. Because, they cannot see our level of issues with energy, fatigue..etc.

KatieAgain; i feel your pain, too! fed

[Cat Mom]

How completely unacceptable!!! Which test results are you waiting for? Are they Ty related or MS related (or both). I feel so badly for you, especially since I read your post that praised your Ty experience. So frustrating!

Jen

[lindaincolorado]

Ohhhh Katie, I am sooo sorry
I do not know if protocol has changed but, I had a person who I could get help from Active Source (Biogen - Tysabri help line) he was my case manager. The ph # is 1-800-456-2255. It might be worth a try..

Take care
Linda

[bree2013]

Thinking of you...

So...went jumping through hoops last week to get all my tests done so I can get my TY infusion on Friday. It all was so crazy.

Results still are not on the patient portal. I called and apparently they are tied up in my PCPs office. The staffer kindly told me they should be reviewed by the end of the week. I told her I had to have them for tomorrow so I could see one of my Specialists. She said maybe your Specialist could redo all the tests.

Tomorrow was the go/no go day for my infusion. No results. No infusion.

I officially give up. I am not fighting the Healthcare System. I just don't have the fight left in me...I am no longer the Warrior I once was famous for. No more TY for Katie...I am going to let them know I am pulling the plug tomorrow...I am so done.

I'm so sorry you're going through this -- you have benefited from TY -- I know it's easy for me to say, but please try not to let your frustration make this ever important decision.

From reading your other posts, there are possibly other health issues you're dealing with-- this is a VERY stressful time for you and if the docs agree that you can continue TY then perhaps an infusion one or two weeks later isn't so bad.

As others have said, the health care system is going to be a bigger challenge for all. It's very sad -- people who need care, compassion and understanding -- have to get emotional, angry and worn out trying to get needed attention.

I hope this issue is resolved quickly for you.

Bree

[KatieAgain]

Thank you all for your kindness...truly..you all are wonderful.

My MS Specialist called this morning first thing and the Oncologist had the tests. They are both exceptional Specialists and will do all they can to straighten this out. Good news first, I will likely be getting my TY infusion on Friday if my fever goes away. I have had a low grade fever for a little while.

Bad news...not all the appropriate tests were done. My hormones are all sorts of messed up. To include the Thyroid which came in low. So an entire endocrine panel needs to be done. And I will probably have to go see an Endocrinologist. Caused by TY...probably...but it can be fixed.

And get this...I have to be retested to see if the Epstein Barr Virus got re-activated...that would sort of stink. They are also checking to ensure I am still JCV Negative. All that blood which is a lot is going to be taken before my TY Infusion.

I have to be completely infection free prior to the infusion so a CBC is going to be run prior as well. If I do have an infection...antibiotics will be issued and all will be delayed. It is possible I have a cold/flu that has not reared it's ugly head yet. Will be tested for a UTI as well.

So not all bad...but I certainly have a very long row to hoe. Very long row. Dang...well it's going to take more than a month for me to laugh this one off. Even with that said, TY save my life...although I am complaining...I should not be.

I know you all already know this, but I really hate MS. A lot. I sure wish I could drink. Some Southern Comfort would certainly give me a better disposition.

Thank you all for listening to me rant and rave...it has been a tiring two weeks.

[DebbieB]

Katie, so glad to hear at least there's been communication and even happier to hear there's a plan.

Yes, you have a long road to hoe, but I have no doubt that you'll be able to do it!

Rant and rave all you want...we get it.

Sending positive energy your way!!!

[lindaincolorado]

Hey Katie, yep ms sucks Glad you got some good docs who are on your side

[dyin_myelin]

Hi Katie,

I am glad that they sorted out the mess, it helps when just one person is in your corner. It is so frustrating though when you feel you have no fight left and the barriers seem so senseless. It sounds though that they are being through, and that is good. I will have to chase down for a JC test as I'm overdue. Do they think that the edema is due to thyroid? Did it go down, are you uncomfortable still? ((Katie)) Please don't give up, even if you ever have to delay a week or two. I second contacting ActiveSource too, as you know I am a fan of them pushing through issues like this.

[KatieAgain]

It is possible the Edema was the Thyroid. My fingers are no longer swollen, but my eyes are still a little puffy. They are fairly certain it is indeed one of the Hormones and they have to figure out which one. I have even said if it's Estrogen, I will have my ovaries removed and go on HRT. We are going to narrow it down and correct it. Without going into a whole bunch of details, it is beyond what is caused by Peri menopause.

Active Source does not want to talk to me. Long story short, they told me a few little "fibs" several years ago, I ended up passed out in a Grocery Store. Next thing I remember was looking at a very blurry Neuro telling me, "Did you know you are allergic to Avonex?" Eight weeks of recovery. LOL...funny now, not at the time.

I think the only thing that scares me right now is the reactivation of the Epstein Barr Virus. I had no idea that could happen.

Found out today I will be going through the infusion even with a low grade fever as long as no infection is present.

[KatieAgain]

I am waiting a week. Have had a fever all day. A cold is finally rearing it's ugly head. It was my decision. A week to nurse myself back to health, get the APPROPRIATE Blood work, and then see the doctor again.

I think it was a good decision and one week off TY won't make a difference. I hope...

[pennstater]

Hi Katie.

Hope you get over the fever and cold quickly. It was the best choice to wait. Best of luck.