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Old 04-23-2017, 01:59 AM #21
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I've been busy with my ms being annoying, and then there have been several family illnesses that I had to deal with. One of those is over. My father died friday morning.

I'm going through being diagnosed again, I was trying to get a new neuro, and he wanted fresh mri's, and he made a mention that he was suspecting that it was something else. So, I'm having to get a ton of mri's and other things for that. So annoying.
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Old 04-23-2017, 10:52 AM #22
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For those who are concerned about Sally, she's still in a nursing home--and not happy there but there seems to be no alternative just now.

She developed pneumonia a few weeks ago and hasn't been doing well enough to communicate. If I receive any more information, I'll post it here.

I've sent her a note letting her know that people here have been expressing concern and missing her. I'm sure she'll appreciate knowing that she's valued here.
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Old 04-23-2017, 03:24 PM #23
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Erin, I am so sorry to hear about the passing of your Dad. I remember how much you talked about him being a nurse and things he used to do. I really am terribly sorry. I hope you're holding up as well as can be expected. Keeping you and your family in my thoughts.

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Originally Posted by Erin524 View Post
I've been busy with my ms being annoying, and then there have been several family illnesses that I had to deal with. One of those is over. My father died friday morning.

I'm going through being diagnosed again, I was trying to get a new neuro, and he wanted fresh mri's, and he made a mention that he was suspecting that it was something else. So, I'm having to get a ton of mri's and other things for that. So annoying.
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Old 04-24-2017, 01:25 AM #24
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I'm not doing well. I thought I was, but I'm not really. It was a horrible experience, and now that it's over I'm starting to have another kind of horrible experience. Not sure that I can do it.
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Old 04-24-2017, 10:16 PM #25
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I'm so sorry for your loss Erin.
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Old 04-26-2017, 12:18 PM #26
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Quote:
Originally Posted by Erin524 View Post
I'm not doing well. I thought I was, but I'm not really. It was a horrible experience, and now that it's over I'm starting to have another kind of horrible experience. Not sure that I can do it.
It's never easy to lose someone you love. Is there someone you can talk to.....maybe a close friend or relative? Possibly a therapist? Sometimes it's beneficial to just voice your feelings to someone.

How is your Mom doing throughout all of this? I hope you can find someone to talk to......maybe a neutral third party like a therapist would be helpful.

Please let us know how you're doing, Erin.
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Old 04-26-2017, 06:44 PM #27
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Aww Erin...it is so tough to lose our parents, no matter how long they live, and how old we are.

Don't be alone with this...call a help line, or go to a church or a clinic to talk and ask for help.

We who deal with the slings and arrows of MS know how difficult it is to deal with loss. Our minds don't handle stress well...

Keep in touch with us...pm us if you need to talk out of the thread...
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Old 05-01-2017, 02:14 PM #28
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Oh Erin I'm so sorry for your loss. I know sometimes when you talked about your family it and their craziness as all family's have he was the one who seemed to help keep things together. I hope your family is helping you some now and not expecting the impossible from you as they have seemed to in the past. Parents are especially hard to lose but seems even more so when they're life "glue". Let us know how you're holding up, and feel free to have as many whine and cheese sessions as you like they're well earned and deserved.
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Old 05-09-2017, 05:00 PM #29
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I know I have been missing for awhile. But have been peeking in at times.

Things just have not been going to well. I have agreed to try the new drug that is out now OCREVUS (ocrelizumab)

First week 4hr. infusion 2nd week 4hr infusion then it will be once every six months. But like everyone of these meds you get a little nervous when reading the side effects.

Now just have to wait and see what ins. will do and what other help is out there it costs $65,000 for one infusion. If they don't get me in some kind of program that takes over the price I guess I won't be doing it. Today they took 7 vials of blood for different tests. Will let you know what happens.

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Old 05-09-2017, 10:22 PM #30
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Hi Jappy!

I'm hoping to get on this drug as well. I see my Neurologist at the end of this month and plan to talk to him then about it. My WBC count has been very low since taking Tecfidera.

I hope you'll let us know how you're doing on this new med. It's the first thing that's come along in quite a while that's given us any hope. I pray that it's a winner for you.

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Originally Posted by Jappy View Post
I know I have been missing for awhile. But have been peeking in at times.

Things just have not been going to well. I have agreed to try the new drug that is out now OCREVUS (ocrelizumab)

First week 4hr. infusion 2nd week 4hr infusion then it will be once every six months. But like everyone of these meds you get a little nervous when reading the side effects.

Now just have to wait and see what ins. will do and what other help is out there it costs $65,000 for one infusion. If they don't get me in some kind of program that takes over the price I guess I won't be doing it. Today they took 7 vials of blood for different tests. Will let you know what happens.

Jappy
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