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Old 08-26-2012, 07:16 PM   #1
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New symptom? Scared and no one to talk to.

I would normally bring this to the people in my life but they have a lot going on right now. Sister has a 5 day old baby, Mom is worring about her, best friends son is having major cranio-facial surgery and husband, well he just worries.
So I haven't had my Tysabri infusion since July 1. I had a cold and then developed a cold sore on my lip. I have been waiting for it all to go away to schedule my next infusion. This morning I noticed that when I smiled at my kids, even after the smile the nerve was still "tugging" my lip. I would get hte same sensation even if I didn't smile. I haven't had anything new or different develope since early 2009. I'm kinda freaked out. As I type this I am feeling a twitch in my upper lip, different from what I felt earlier.
Its freaks me out cause on of the things that got my diagnosed was facial paralysis on the same side. I just can't bring my fears to my family because I don't want to worry them.
DO you think I should contact my Neuro about this or mention it at appointment in November?

Last edited by Reeny706; 08-26-2012 at 07:19 PM. Reason: ETA a question

 
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Old 08-26-2012, 07:45 PM   #2
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Re: New symptom? Scared and no one to talk to.

Anytime I have a new symptom which causes me concern, i will pass it to my neuro via her nurse. If it is serious or warrants attention, they will call me back. I get an upper lip twitch sometimes. I call it my "Elvis Lips".

When you need to chat, please know that you are always welcome here!
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Old 08-26-2012, 08:25 PM   #3
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Re: New symptom? Scared and no one to talk to.

Thanks for the reply Jayhawk. I know if I call my Dr they will want to see me. I'm justwondering if this is needed.

 
Old 08-26-2012, 08:44 PM   #4
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Re: New symptom? Scared and no one to talk to.

It is difficult to know because symptoms vary in their intensity and overall affect depending upon the MSer. I hope that you are able to get things figured out. If this happens again, at least you will know if it is serious or not.
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MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

Last edited by MSJayhawk; 08-26-2012 at 08:45 PM. Reason: add

 
Old 08-27-2012, 03:59 AM   #5
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Re: New symptom? Scared and no one to talk to.

Reeny,
you do know that Herpes simplex is one of the side effects of Tysabri? If you have it in your body, this can bring it out. One of the things which is recommended for this is taking Lysine - 1000 mgs a day- in order to keep the virus domant. You may want to talk to your doctor about adding it to your diet- its a capsule and very inexpensive, found at any health food store.

The fact that you are having any sort of problem at all - you should probably report it to your doctor. In fact, Im assuming it was the touch center which decided not to infuse you in July and so far in August? Your doctor should be getting those reports and know something is amiss....but you should follow up.

I hope things get better soon...please keep us posted and you are in my prayers and thoughts!
'Nikki
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Old 08-28-2012, 12:48 PM   #6
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Re: New symptom? Scared and no one to talk to.

Thanks for the replies. I am still having the problem so I called into the office this morning. The nurse called me back to get all the details so she could speak to the Dr. I haven't heard back yet.
As for the herpes, they have me on Valtrex. I was prescribed it a while ago because of canker sores. I stopped taking it because it doesn't do anything for canker sores. I started it up again when I noticed the sore but it was too late to stop it from coming. Now I'm taking the maintenance dose.
Hopefully they call back soon.

 
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