Who do you trust: yourself or doc

[LL60]

Gone are the days of Marcus Welby (anyone remember?)
And I think that has turned out to be a good thing. No kindly old doctor telling us what is best for us. No more house calls and great bedside manner, but we are not kept in the dark about things and have a chance for a say so in our own care.

But......

When is following your own gut feelings taking too much of risk rather than going by physician suggestions?

They went to school a long time.
But, you are an expert on your own body.

They, many times, just want you to trade one risk for another.

They get nervous about anything coming back on them.
You just want what is best for yourself.

You are not a part of their lives. You are just a patient. One in many many many.
Your life is very important to you.

You've done your research.
They have not stayed current.

Why give up a good thing for a known med that is no where as good?

Why take the chance of the rebound effect sending into an unknown hell.

Chance
Risk

Are they one and in the same?

I'm ready to chuck in all in just so I don't have to deal with it anymore. Just take the risk, take the chance, on whatever life throws my way on no meds.

"Do whatever it takes to remain stress free." Dr. Vollmer said in a lecture I went to that he gave.

Well, then cure MS, so I don't have to stress about all these stupid decisions!

[Dale76]

Gone are the days of Marcus Welby (anyone remember?)
And I think that has turned out to be a good thing. No kindly old doctor telling us what is best for us. No more house calls and great bedside manner, but we are not kept in the dark about things and have a chance for a say so in our own care.

But......

When is following your own gut feelings taking too much of risk rather than going by physician suggestions?

They went to school a long time.
But, you are an expert on your own body.

They, many times, just want you to trade one risk for another.

They get nervous about anything coming back on them.
You just want what is best for yourself.

You are not a part of their lives. You are just a patient. One in many many many.
Your life is very important to you.

You've done your research.
They have not stayed current.

Why give up a good thing for a known med that is no where as good?

Why take the chance of the rebound effect sending into an unknown hell.

Chance
Risk

Are they one and in the same?

I'm ready to chuck in all in just so I don't have to deal with it anymore. Just take the risk, take the chance, on whatever life throws my way on no meds.

"Do whatever it takes to remain stress free." Dr. Vollmer said in a lecture I went to that he gave.

Well, then cure MS, so I don't have to stress about all these stupid decisions!

I'm not totally sure what your getting at. You should do what it takes for you to feel your best. If that means taking a different path then your doctor suggests then that is probably best.

In my experiance there are many bad doctors and personally I'm sick of them and only go when I absolutely must.

[LL60]

Was just venting after a bad appointment.

"........I'm sick of them, and only go when I absolutely must." My feelings exactly.

[Tomjadg]

We live with this misery 24/7.
Nobody knows you better than you...doctor included.

Like most of us, we educate ourselves about this disease and treatments. My Neuro, who I see maybe 3 times a year, knows I keep aware of things, and lets me call the shots.

I just changed my Ty infusions to every 8 weeks because I am a high +JCV, and will have less chance of PML.
He was fine with that.

Do what you think is best.

[LL60]

It will be interesting to see if the longer spacing will have any effect on the titers. I can't see that mine will drop to below 1.5, but at least if they do start dropping, I will feel a little better. The last one was 4.1.

I will do every 6 weeks for 3 times ad then go to every 7 weeks. That's as far ahead as I have planned anything.

Did you jump right into going from 4 - 8?

[Tomjadg]

No. I've been doing 6 weeks for awhile now. Started at 4, but decided to go to 8 weeks now. I don't feel any different as I get closer like some do.

[lindaincolorado]

Good morning LL60 (I still have 2 min of morning )
I hope (and said a little prayer) that your titer # goes down and keeps going down !!

I go to the RMmsC (Dr Corboy, co-director) he listens to me and he knows more than me about ms. I, too, am now going to every 6 weeks (my choice)-he wants me to have an MRI every 6mths instead of every year. One of the other neuros at the center wants (I think takes)his patients off Ty if they go jcv+ no matter how low I am .27 and he would want me off

I do not know what I would do if my #s were what yours are-I think I would go to Rituxan-I almost did 6 mths ago, but when I was told it probably wouldn't help with sx relief I stayed with Ty because of QOL ??

Stay strong and keep doing well

[lindaincolorado]

LL60

Have you listened to the sticky at the top of the thread Mitigating Risks by Dr. Hunter from a ms center in Tennessee? I just did; you might want to.

[LL60]

Yes Linda, I have listened to the tape in the pass and just did again to make sure I hadn't forgotten anything. Doesn't really say much.

I know a lot of doctors kick their patients right off when they are positive, Dr. Vollner at RMMS said in a lecture I went to here that he doesn't keep his JCV+ pt on Tysabri. Even though he said many times though out the morning that exercise combined with Tysabri was the very best thing for MS that is out there. I would love to be able to go to the RMMS. I get their magazine and online stuff. They did a risk article about 2 years ago, that really is what helped me make up my mind to stick with what I wanted and not what my doctor wanted. More than just information, they just seem to care so much. I'm glad you can go there.

I am just waiting for more information and numbers to come out after we have gone for a couple of years now with people with titers above 1.5 staying on.

I still feel (although it is only about 99% now - not 100%) that the risk of rebounding or of my symptoms coming back like they were 5 years ago is not worth the risk of stopping a proven drug for me over what is still a very slight chance of getting PML - with what is known and made public at this time.

Would love Dr. Foley to keep everyone up to date on what he started; with following up on his patients who have moved their infusions out. Anyone come across any more articles, please share. So far, out of 587 who are JCV+ but doing their infusions at 6, 7 or 8 weeks out, not one person has gotten PML. But that is a pretty small group.

Think it may be time to fork over the big bucks and go outside of my insurance and get a second opinion.

[Myoak]

LL60, there is fall conference of the American Academy of Neurology (AAN) Oct 31 thru Nov 2. Doubtless there will be many interesting posters on the latest research.

You mentioned the possibility of getting a second opinion, which is fine. However, from the little I know of you, you might be more comforted by further educating your own opinion. BTW, I believe you are currently very well informed on issues surrounding Ty.

The fall conference will have more to say about dose extension on Ty. If you would like to review the posters presented at the AAN earlier this year Google “Browse Abstracts/ American Academy of Neurology” or try this link: https://www.aan.com/conferences/2014...wse-abstracts/

About 2500 abstracts were presented; perhaps a 100 or more involving MS. The abstracts will give a good idea what researchers are looking into.

Of course, I have to repeat, the information you particularly, LL60, often want is not available so I’m not sure what value a second opinion would provide. In fact, if you review the latest MS abstracts of the early 2014 AAN conference, you will be as up to date as possible.

Doubts and second guesses always come; the older we get, the more frequent they come. LL60, you may believe that a titer over 4 has more risk than a titer of 2 but there is no published evidence that is true. Biogen publishes risk of greater than 1.5 all in the same group. If 4 presents greater risk than 2 only Biogen knows; and they don’t say.
Another neuro won’t know because it is an unknown; that info has not been distributed by Biogen.

LL60, your reasoning always seems sound to me; fears are understandable, we all have them. All of us are so much alike. Continue allowing intellect to guide you in spite of the doubts and you will be just fine. Whatever you decide won’t make you less huggable. Best to ya!

PS... so many doing dose extension more data is certain to emerge about it. Hang in there.

[Myoak]

Tysabri better in practice than in trials...

Natalizumab treatment in multiple sclerosis patients: a multicenter experience in clinical practice in Italy.
http://www.ncbi.nlm.nih.gov/pubmed/25004826

“We evaluated efficacy of natalizumab in relapsing-remitting multiple sclerosis patients in a clinical practice setting. We report data on the first consecutive 343 patients receiving natalizumab in 12 multiple sclerosis (MS) Italian centers enrolled between April 2007 and November 2010.”

“Natalizumab was effective in reducing clinical and neuroradiological disease activity. Its effectiveness in clinical practice is higher than that reported in pivotal trials and was maintained over time.”

[golfore]

Hi LL60, After 83 doses of Tysabri I was forcefully taken off it. I had a titer of 1.93, I think. Previously it was 1.62,,,, I think. I had been on a 6 week schedule for at least a year.

I had surgery and was off Ty for about 6 months. I did not have any new MS problems during that time. The surgery was because I had a spinal cord injury that developed right under of my neurologists nose.

That is exactly why we need to be on guard for lousy doctors. My titer went up after only a few months back on TY. I think there is to little reliable information about all this.

Is there any information about the overall health of those who develop PML?

Myoak sounds like a very informed, knowledgeable, person. I think another opinion would be a waste of $$. That's just my opinion.

Good luck...