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Tysabri Check In, Support and Information Part Three

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Unread 12-21-2012, 11:29 PM   #321
Natalie8
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Well oh crap! I'm not sure I even remember what # infusion I'm on. I think it was #37 today. But it's been 4 years and 5 months on Tysabri. Still going with no relapses. Yeah!

I think my fatigue problem is a little worse than it used to be, but that's about it. I'm getting ready to start taking Provigil every day -- my doc thinks it might also help with fatigue related depression. But I only need 50 mg a day (my body is so sensitive to drugs).

I had the blood test today for the JCV virus antibody. So far I've had 3 negative tests. They ask we get tested every 6 months.

Hope all is well with everyone else. Happy Holidays!!
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Unread 12-23-2012, 07:08 PM   #322
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Happy Holidays to you and all!
Linda
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Unread 12-27-2012, 04:45 PM   #323
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#76 this a.m.
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Unread 01-01-2013, 05:45 AM   #324
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Quote:
Originally Posted by Grammie 2 3 View Post
#76 this a.m.
#74 on the same day!
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


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I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
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Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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Unread 01-20-2013, 08:56 AM   #325
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Hi guys

I am in my fourth year on Ty, and for the first time, I have developed a really nasty upper respiratory infection that will not go away. I have have had it for more than three weeks now, and it came on the afternoon of my last infusion.

I went to the emergency room at my local hospital, because the night before my throat was closing up when I was coughing, and I couldn't breathe but the nice doctor assured me that although I was running a fever, my chest was clear (I knew that - I had a dry cough) and 'Tysabri does not affect the immune system'. So, it is a virus, it will 'clear in its own time and I just need to be patient but thanks for coming in'.

So...another week later, my throat and mouth are totally raw, I can't eat, I can't sleep, I can't stop coughing (dry coughing - just irritation), I can't get into see a doctor in my town and I am getting totally exhausted.

Anyone else experience this kind of thing that seemed to take forever to go away? I had fever for about ten days, that has gone, but I feel weak and tired - like a limp dish-rag.

This has all happened in the middle of an horrendous heat-wave which hasn't helped and I feel like h*ll.

Lyn
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Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993.
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Unread 01-20-2013, 04:32 PM   #326
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So sorry Lyn. It sounds like you have/had a bug from hell. Didn't I hear that TY can cause infections? I know that you shouldn't have the infusion while you have an infection.

Some TY guru will come along and tell you what to do, but I hope you are better soon..
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Unread 01-21-2013, 03:54 AM   #327
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Hi Lynn,

Sorry you are feeling so cruddy for so long. That ER doctor is full of you know what. Of course Tysabri affects your immune system! It lowers all of our immune systems. There is no way you can see another doc? I think you need to go back for a follow up. The fact that your fever is gone is a good sign.

One thing that might help is some codeine cough syrup -- it will quiet the spasms and coughing and hopefully allow your throat to heal. Also if your throat is closing up and inflamed they can give you a steroid shot (which is usually in the butt I think). I had 2 teenagers with mono in my household and they were given steroid shots to help with the sore throat and swelling.

Make sure you are getting plenty of rest - when you are sick your body just needs more sleep.

I did once have a viral respiratory infection with cough that lasted for more than a month. I want to say it lasted for 5 weeks. And this was long before I had MS and when I was healthy as a horse. It just sounds like you caught a very nasty bug.

I hope you are feeling better soon.
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Unread 01-21-2013, 12:05 PM   #328
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Hi Lynn,
so sorry for what you are experiencing
I think you need to see another Dr.
Linda
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Unread 01-21-2013, 07:50 PM   #329
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I just found out I have tested negative for the FOURTH time on the JCV antibody test. They did forget to pass the results along to me which came in almost 2 weeks ago. Ergh. But hey, at least I'm still negative!!
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Unread 01-28-2013, 02:45 AM   #330
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#75 done.
JCV test negative again.
I actually got my MRI w/no copay, because my ins. co. was interpreting my policy wrong, which is what I thought in the first place!
As usual, no new lesions, no enhancing lesions.
I may be nawmul!
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
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