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Old 02-02-2009, 05:52 PM #1
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Sorry about the tooth River! It sounds miserable.

I may have had to have the toenail removed - and it hurt - but I don't have any wisdom teeth! I was lucky to have been born with zero. All four of my siblings had all four that had to be removed because they were impacted.

Now, I had four boys and when they were born, I said, "You are blessed with no wisdom teeth!" The oldest had one, the second, two, the third had zero, and the last had two. So out of a possible 16, we only ended up with five - and I'd say that is pretty good.

The funny side of this story is that my husband had to have a colonoscopy at a much younger age than most men because a sibling had some polyps. He ended up having some also, so he is on the three year colonoscopy schedule, and his sons will have to start having them at the age of 35!

So I remind my sons that there mother gave them "no wisdom teeth" and their father gave them colonoscopies!!!

(We won't talk about MS.)
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Old 02-02-2009, 11:27 PM #2
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Polyps, impacted wisdom teeth, bad toenails....gahhh, it seems like more and more stuff falls apart as you keep getting older.

RW, I'm sorry for the tooth pain. That is just no fun.

I had an appointment with my neurologist today. It was supposed to be my #6 infusion check up but I did that with the nurse in Dec. since the doc was overscheduled around the holidays. I was also supposed to have the #8 infusion today but given the viral cold they said no. The neuro agreed with the infusion nurse that there was no harm in waiting 2 more weeks until the cold was completely gone. I still have some cough and congestion. She seemed to think waiting 1 week would be fine too.

I think I told you this before but my neuro has MS and is on Tysabri. I'm not sure yet if I like that my neuro has MS too. But that is a whole other story!

I asked her about the protocol at the Multiple Sclerosis Research Center in New York (which was a spinal tap, blood serum test, and MRI every 6 months to watch for PML). She thought it might be on the aggressive side, having to get a spinal tap every 6 months. She had discussed with other neuros that 1) the spinal tap headache seemed to be worse if you were already on Tysabri 2) the hole to reach the spinal fluid was more likely not to close up as quickly, thereby letting more fluid keep leaking, because of the immunosuppression from Tysabri. Anyhow, my clinic already tests my blood every 3 months for the JC virus. She told me if I wanted to have a spinal tap at the 12 or 15 month mark I could to check for JCV for peace of mind about PML. I guess I can think on that one.

Also, one of the researchers at my MS clinic just published a piece in the Archives of Neurology suggesting the possibility of taking a "holiday" from Tysabri. He discovered there were fewer immune cells called CD4 T cells in the brain of people on Tysabri and perhaps this increased the risk for PML. By taking a holiday one could allow those immune cells to build up again. My neuro said there was debate amongst the doctors in the clinic about this suggestion. Her concern was that if you take a Tysabri holiday for any reason your risk for developing antibodies goes up if you try to go back on the drug. And then the drug becomes useless.

I'm still pretty new to this and sometimes I find these visits to be quite frustrating because there are never any "right" or "definitive" answers to the long detailed questions I ask. Sometimes I wish the neuro could say "Okay, do this, do that, make this decision, and then everything will turn out this way...." I guess it doesn't work like that, right?
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Old 02-03-2009, 12:24 PM #3
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Hang in there everyone!

I hope that things go your way.

-Vic
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Old 02-03-2009, 07:12 PM #4
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Today's issue of Neurology: http://www.neurology.org/current.shtml

Natalizumab: Bound to rebound?
Neurology 2009 72: 392-393.

Immunologic, clinical, and radiologic status 14 months after cessation of natalizumab therapy
Neurology 2009 72: 396-401.

Effect of plasma exchange in accelerating natalizumab clearance and restoring leukocyte function
Neurology 2009 72: 402-409

Elan website PDF about Cleveland Clinic and PLEX use for PML: http://www.elan.com/images/Cleveland...essRelease.pdf
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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?


.
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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Old 02-03-2009, 07:51 PM #5
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That is great news! I wish I could read the Neurology today article, but I did get to the other one.

Hopefully being vigilant will keep PML at bay.

I know my 3 month bloodwork was perfect - and I'm feeling fine, so that is all good news.

Now if you just didn't have to have a LP to know if you're carrying the virus????
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Old 02-04-2009, 01:23 AM #6
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RW, thanks for the heads up on the latest on Tysabri!

Here is a video that includes a brief clip/interview with the doctor who did the plasma exchange testing with Tysabri. Keep in mind this has a business/market slant since it's from CNBC.

http://www.cnbc.com/id/15840232?video=1019840600&play=1
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Old 02-09-2009, 06:02 AM #7
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MS Patients Treated with TYSABRI® Remain Free of Disease Activity for Two Years, According to Data Published in the Lancet Neurology

http://www.pr-inside.com/ms-patients...n-r1048862.htm
__________________
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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Old 02-10-2009, 07:59 PM #8
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Quote:
Originally Posted by 4boysmom View Post
That is great news! I wish I could read the Neurology today article, but I did get to the other one.

Hopefully being vigilant will keep PML at bay.

I know my 3 month bloodwork was perfect - and I'm feeling fine, so that is all good news.

Now if you just didn't have to have a LP to know if you're carrying the virus????

Give me a day or two and I will send the articles to you if you like
I gotta get through two more 12 hour shifts and an extraction of that stupid wisdom tooth!

How was your MRI?
__________________
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!
.

Last edited by Riverwild; 02-10-2009 at 08:25 PM.
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Old 02-10-2009, 09:15 PM #9
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Bad news from Brenda tonight! I had an insulin resistance test yesterday morning, and my MRI in the afternoon. When my neuro's called and left me a message to call her back, I feared the insulin test was bad!

It shows I have a moderate level of resistance, and I'll have to come in and talk about that further. It could be good in that it will force me on a diet, possibly with medication, to get my weight and insulin under control. I was expecting as much since my dad is Type 2, I'm overweight, and I have high BP.

I was not expecting a bad MRI ! The MRI showed two more lesions and that my disease is progressing. I will be going in for an antibody test on Thursday along with seeing my neuro! I just don't get it! I don't have any symptoms other than that tingly hand and being a little wobbly with balance at times.

My mind is as good as ever! My eyes get blurrier when tired lately, but I've never been on steroids for any of this MS stuff! I wouldn't even know I had the dang disease if I didn't have the MRIs. My neuro must be worried also. He can't figure out why the disease is progressing on Ty unless I have antibodies.

What am I going to try next if I have antibodies? On Avonex, the disease progressed. Rebif, disease seemed to stabilize but I itched all over, had a patch of psoriasis that didn't go away, and was tired all the time. Neuro thought it was probably allergic reaction of some kind. I'm guessing he'll try Copaxone, but I don't know!

I'm very discouraged tonight. I thought everything was going so well, it just through me for a loop! Add stress from work and the world is not pretty tonight.
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Old 02-11-2009, 01:43 AM #10
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Hey RW -- When you've got the time, can you send those articles to me too? Many thanks!

Quote:
Originally Posted by Riverwild View Post
Give me a day or two and I will send the articles to you if you like
I gotta get through two more 12 hour shifts and an extraction of that stupid wisdom tooth!

How was your MRI?
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