Off my chest and onto someone else's.

[Thinkimjob]

All right, here's my denial/ vent/ sick of it rant.
I really don't like MRIs and I don't like being forced to look facts in the face re progression, dmds, lesions.
I'm not overly fond of neurologists, either.
I know all of this is an irrational response to the bearers of bad news. Not their fault I have MS etc
I am dreading Wednesday's MRI, followed by visits to three, yes three, doctors on Thursday - a MS specialist, a neurosurgeon and a neurologist.
All they can offer me for MS is Tysabri, and that will pretty much take over my life.
I've always thought MS will do whatever it is going to do regardless.
Would it really be so wrong just to let nature take its course?
Just being a coward. Maybe.

[Jules A]

I think we all are scared in fact I am downright terrified of what MS can and will do to me however I get some power and piece of mind by trying whatever we have available to fight against this miserable disease.

Although seeing three docs would be too much for me also I love MS specialists. I am so grateful that someone would be willing to dedicate their life's work to such a thankless disease with next to no chance of them actually discovering that magic bullet we all are waiting for or anything notable at all.

I guess to answer your question, no, there isn't anything wrong with just letting nature take its course if you can be at peace with that. Personally I would be consumed by the what-ifs with MS however should I ever get cancer it is very doubtful that I will do anything and definitely nothing extraordinary as I have seen such pain and suffering with people who aren't able to come to peace with leaving this world when it is time.

The only other thing I wanted to add is that everyone's reaction to medications is different and I haven't heard anything to indicate Tysabri would actually take over your life. So maybe keep an open mind?

Be well and best wishes with whatever you decide.

[Sequoia]

I'd be afraid of just letting nature take its course. The natural course of MS is to continue to progress, after all.

The people I know who are on Tysabri have not let it take over their lives at all. It's just one infusion a month, and they (the MSers) just keep on keepin' on. Some of them have to travel quite a way for their infusions, too.

Cheer up! It's reasonable to hope that there will be something with Tysabri's efficacy but without its risk soon, and you'll only be on T for a short while.

[Tomjadg]

I agree with you to a point.

It is what it is, and you can only do so much to slow it down(maybe).
I'm sure you educated yourself about this, and the options. We live with this 24/7, and know more about it than the Docs.

I call the shots on MRI's. They did all three one time, and it was miserable to lay that long, so I told them never again.

I was scheduled for all three next week, and I told them absolutely not, so they will do two next week, and the third the following week.
I changed my days off to Fri/Sat last year, so I make all appointments for Friday, and it is close, so no big deal.

The MRI's are no big deal. I get music and ear protection, and the Neuro can compare them with earlier ones to judge changes.

I take Ty once a month, and it ties me up for one hour a month, compared to about 3 hours a month taking 3 Rebif shots a week when I did them.

You are not a coward, but like me, a realist.
I have thought about stopping everything, but I can't take the chance that this is helping in some way.
When I hit the 2 year Ty mark, I will change to BG-12 for the PML protection.

[tellnhelen]

I hear you. Please don't be angry. Try to calm down and assess the situation. They do have pill for MRIs that my help. The neuros are support you. You will not be able to hear them if you are angry. Please be calm

[Tomjadg]

I was offered a "pill" to do all three MRI's, but that meant my wife having to take off to drive.
No thanks.

[JerryD]

Hi, I wanted to get in, here. I was at a Tysabri seminar on Tuesday evening. The neurologist that presented made it seem that there is a possibility that your body can have some positive effects from the drug. Some people get some boost in energy/stamina after a few infusions.
If you haven't heard, you must be tested for the JCV virus. And this test is, apparently, at no cost. So, if it doesn't have many negatives, why not take it?
I am dx'd with PPMS. I don' take any significant drugs, none are FDA approved for PPMS. I use primarily nutrition and supplementation as treatment.
I am following the myelin trials that are starting phase I through the Cleveland Clinic.
The point I am trying to make is : I will fight this MonSter 'tooth and nail' before I will give in to it. I hope you find some way of doing that, too. Good luck

[BigA]

All they can offer me for MS is Tysabri, and that will pretty much take over my life.

Why do you say that? Maybe you'll feel better. Apart from PML, it's highly effective. However, it is not a quick decision and once you go on, you should change your mind.

This is obviously a difficult emotional period, but you don't have to do anything and you can take your time to educate yourself and decide.

[hexed]

I'm just going to respond to some of the points you made.

I really don't like MRIs and I don't like being forced to look facts in the face re progression, dmds, lesions.

I don't think anyone really likes MRI's. There are however facilities with better and more spacious MRI machines. Find one you like because the bottom line is, you can either lay back and do nothing, or step up and do something. In the immortal words of Andy Dufresne "Either get busy livin, or get busy dyin"

Ignorance is bliss. That part is true. Not knowing means you don't know how bad it is, how bad it has become, or how bad it will be. But on the other hand you will not know how GOOD it is, how better it has become, and how good it will be in the future. I wouldn't be able to deal with "not knowing" and as GI Joe says, "knowing is half the battle".

I'm not overly fond of neurologists, either.
I know all of this is an irrational response to the bearers of bad news. Not their fault I have MS etc

Then find one you like, plain and simple. Especially seeing that you have 3 Doctors I couldn't imagine spending any time with one I wasn't crazy about. I had a general neurologist, and now I have an MS specialist/neurologist. I absolutely LOVE my MS specialist, and I stopped seeing my general neuro once I found this guy. Find someone you like. Someone that uplifts. Someone who at least seems like they care. This might be one of the most IMPORTANT tool in your arsenal against this drug. I personally went to UT Southwestern here in Dallas for the primary reason that they are n the cutting edge of MS being in academic medicine.

I am dreading Wednesday's MRI, followed by visits to three, yes three, doctors on Thursday - a MS specialist, a neurosurgeon and a neurologist.

Why 3 Doctors? That would drive me crazy. For someone that hates info on this disease and the progression, I would not be putting myself through 3 Dr visits in one day (unless it was for 2-3 different issues).

All they can offer me for MS is Tysabri, and that will pretty much take over my life.

Why only Tysabri? Are they in bed with Biogen? Are you JCV- or +? TBH, if you are JCV-, Tysabri sounds like the best route. But if you are +, then I see no reason why they do not have another treatment that will not possibly give you PML.

I've always thought MS will do whatever it is going to do regardless.
Would it really be so wrong just to let nature take its course?
Just being a coward. Maybe.

Once you get a medication that you respond well to (could be any of the current 8 options), there is statistical proof that it WON'T do whatever it is going to do regardless. I don't think it is you being a coward, but more like if you don't treat it daily, or monthly, you won't think about the fact that you have this disease which as I had said before, ignorance is bliss. The big problem though is if and when you experience an attack that takes something serious from you, you will think about it every day. Furthermore, you will most likely think "how much better off could I be if I would have started Tysabri?" To me, that is NOT a question I want to ask myself when it is too late.

One last thing is something my Dr said. If you experience side effects that you cannot live with, GET OFF THE DRUG. There are too many options right now to continue to stay on a drug that makes you miserable. There are also too many drugs on the horizon to not find the one that not only you respond to best, but the one that gives you the best quality of life. The only time I could see leaving the disease untreated is if you go through all of the DMD's, and don't find one you respond well to.

I know I might have people that disagree with me but I like to have a say in how my future looks.

What type of MS do you have? RRMS? PPMS? SPMS? What kind of symptoms are you experiencing? I think those things are also a big factor.

[Thinkimjob]

Should have explained the 'journey'. I've had MS for 14 years, five on beta, six on Copaxone, with a subarachnoid haemmorhage in the middle.
I'm okay with Copaxone, but Tysabri would no doubt be better.
Apparently, my doctor has been told that two flares in three years is too many to justify our government's cheap drug system paying for more Copaxone.
I'm honestly not as bad as I thought I would be. Just can't walk far, fatigued, mind not what it was.
Copaxone means a visit to the doctor here in town once every six months.
Tysabri means a visit to Brisbane (four hours away, plus the money for fuel, accommodation etc) once a month, for the forseeable future.
My part time job would probably have to go.

Hey ho. Just a bit depressed about the whole thing. The wait is the worst. Thanks for all your kind responses.

[futurmil2b]

Should have explained the 'journey'. I've had MS for 14 years, five on beta, six on Copaxone, with a subarachnoid haemmorhage in the middle.
I'm okay with Copaxone, but Tysabri would no doubt be better.
Apparently, my doctor has been told that two flares in three years is too many to justify our government's cheap drug system paying for more Copaxone.
I'm honestly not as bad as I thought I would be. Just can't walk far, fatigued, mind not what it was.
Copaxone means a visit to the doctor here in town once every six months.
Tysabri means a visit to Brisbane (four hours away, plus the money for fuel, accommodation etc) once a month, for the forseeable future.
My part time job would probably have to go.

Hey ho. Just a bit depressed about the whole thing. The wait is the worst. Thanks for all your kind responses.

I am with you about feeling depressed about the whole thing. I still work a full time job... My right leg gives me a fit from sitting all day. I could not run if somebody paid me to.. well, some days I can run a little.

For the most part, I am doing ok without meds. No flare ups.. I was dx a little over a year ago at the age of 51..GO FIGURE. My last MRI showed decreased lesions and that's without meds.

I recently started allergy shots which I think was a mistake. My body stays tight and tensed up, the allergy shots made it a bit worst. Made my right leg issue a bit worst. Today was the last day I was to get my last injection for 2x a week.. next week would have been 1x a week... CAN'T GO BACK.

Feel head pressure, nose and face are just feels awful..tightness, just hard to explain, tension headache on and off, neck/shoulder tightness..muscle spasms in back, abdomen, ribs on and off... and to top it all off, the weather here is HOT...triple digits this weekend. Was planning on going to the movie but may have to stay
indoors.

I am still in denial, don't believe I have MS. I don't know what a flare up is.. well I sorta know but never had one. I am also going through menopause.. which causes muscle tension..no hot flashes but everything else.. WHAT FUN :0(

Ms. Jay