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Old 08-01-2011, 10:15 AM #1
edward Gormley edward Gormley is offline
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Hi, my name is Ed and I've joined this forum because of my daughter, Meg. Meg is 36 years old. She has been a type 1 diabetic since age 6. She was diagnosed with MS 8 years ago, while she was pregnant with my granddaughter. She's been treated over the years with Copaxone and other meds that i can't even recall right now. About a year and a half ago, her Neurologist introduced her to Tysabri and even though she was, I hope, aware of the possible side effects, decided to get the infusions. All went well until last March, when she was hospitalized complaining of severe stomach pain, vomiting and confusion. The hospital treated it as DKA and released her after 10 days. My wife and I mentioned to her attending physicians the fact that she was taking Tysabri and were greeted with blank stares. No one seemed interested. A week ago, I brought her to the emergency room of the same hospital with the same symptoms as in March. Again, she was admitted, stabilized and released 5 days later. I told the nurse on CCU that she had had an MRI 2 weeks previously and she obtained a fax of the report from the Neurologist. The report indicated cerebral ischemia. No one seemed concerned. During all this, I was speaking with an aquaintance who works at a University hospital in the mid-west. She asked an aquaintance of hers who is a Neurological Research Fellow at the same hospital what could be going on and was told to have her checked for PML and to get her off the Tysabri right away. Meg is going to the Neurologist tomorrow to confront (possibly bad choice of word) him about the possibility of PML.
That's the situation and we have some questions that someone can maybe answer. First, should she have been put on Tysabri at all with an immune system already compromised by diabetes? Second, Shouldn't she have been monitored closely during he treatment? She has not had that many MRIs over the last 8 years and only one over the last 18 months and none of those with contrast. Third, if she does turn out to have PML, what can we do?
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Old 08-01-2011, 10:52 AM #2
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Hi Ed and welcome to NeuroTalk. I'm sorry such a frightening event has brought you here but there are many here who can relate to your situation.

We have a large MS community and there is a thread in the MS Forum dedicated especially to Tysabri. Here it is:

http://neurotalk.psychcentral.com/thread142931.html

I'll also include the link to the MS Forum itself.

http://neurotalk.psychcentral.com/forum17.html

I hope you can find some answers to your questions. Your daughter is very fortunate to have a Dad that cares so much.
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Old 08-01-2011, 07:23 PM #3
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hi and welcome to NT

You'll find lots of info here about MS.

There's so many people here that understand.

I look forward to seeing you around the board.
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Old 08-02-2011, 01:39 AM #4
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Wink Welcome aboard!!


Hello and welcome to NeuroTalk. Happy to see you have come, let us know if we can be of any help. Feel free to jump in any where. There are great number of fellow members here to assist as possible.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene
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Old 08-02-2011, 05:21 AM #5
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Heart One step at a time, & keep asking questions.

It's not hard to figure how you came to your AKA. Frazzled, & then some.

Here's the Diabetes Forum, just in case you might run into someone there to whom some of this might sound familiar. You never know.

http://neurotalk.psychcentral.com/forum53.html

I've seen that blank stare, & there's not much scarier. You go to a doctor or hospital with all these symptoms that've already scared the daylights outta you, & instead of getting answers (or even educated guesses) what you get is this blank stare that says, "I've never heard of that & haven't the foggiest idea of what to do about it."

Well, if the doctors don't know what to do, I guess I'm gonna die, right?

Or in your case, your daughter.

I don't think doctors realize how easily/quickly they can destroy our world. But please remember, doctors are human. That's why we get 2nd & 3rd opinions.

Try to stay grounded in the present. IF it turns out that Meg does have PML, you will deal with it then. IF she has it, try to focus on her individual, special situation. Don't assume that she will follow the "average" pattern. She's Meg! Considering how you're stepping right out there, taking on the world's demons on her behalf, I have to think that Meg is no less brave than her dad. Far from average.

Drop in any time with questions, frustrations, rants, joyous moments--or just to grab virtual hugs. I'd love to meet Meg too, if she's up to that.

xoxoxoJude

^

Last edited by BlueCarGal; 08-02-2011 at 05:23 AM. Reason: bold URL
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