Does everyone second guess themselves?

[NewGranny]

Does everyone second guess themselves concerning their MS treatment? I was diagnosed April 2010 and started on Copaxone, took it for about 6 months but had to stop due to cost. I was able to get assistance with Rebif so I started that and it made me terribly sick after I had worked up to a full dosage. July of this year I went to Tysabri and I am questioning whether I want to continue.

I know this is a personal question and I am the only one who can answer if it is right for me but does everyone seem to question themselves? I do not feel better after taking Tysabri now for 8months, actually I had a new area in my back start bothering me the month after I started the Ty. I have a huge deductible and then I question whether this is actually working for me.

I had an MRI in my brain only in December and I have no more lesions but they didn't do another one on my spine this time which is where the majority of my lesions were. Guess I am looking for reassurance that I am not in this boat alone here.

[Redwings]

Hi New Granny:
Periodically reevaluating a treatment program based on the latest available information isn't the same thing as second guessing. Periodic reevaluation is an educated and objective process, and is a wise thing to do. Second guessing is just guessing.

Second guessing comes from 1) making an original decision based on insufficient and/or faulty information compared to what information actually was available at the time, 2) the inability to properly evaluate information, 3) not knowing oneself well and lacking confidence on one's own ability to make decisions, and 4) changing a decision based on whim and possibly fear, not evidence.

Which approach do you think you're applying?

I never second guess myself. I periodically reevaluate my treatment plan based on evidence. I manage my disease like I run a business -- as objectively and unemotionally as possible. It's akin to doing a quarterly profit and loss statement and then changing or maintaining my course of action as appropriate to try to get the outcome I want. If disaster strikes, I follow my pre-established disaster plan.

Often the outcome I want isn't realistic, so I just have to make the best decisions I can based on the best information and resources available at the time. Nowadays, all of my choices are between bad and worse. But none of my decisions are ever guesses.

Questioning whether Tysabri is working for you or whether it's financially feasible compared to the results you're getting sounds like you're doing an assessment of the evidence at the 8-month mark. (That's the smart thing to do! ) It doesn't sound at all like you're just second guessing yourself.

[KSeraSera]

Hi, I think I may understand what you're saying. I have had similar questions.

I just stopped Avonex for the second time because my body can't tolerate it and it alters my mood to the point of catatonic. Not great. I tried Copaxone, but an allergic reaction sent me to the ER.

I won't take Tysabri or Gilenya. I have the information on the side effects, the success rates, etc. But, the variables for me is that I don't know what my MS has in store for me but I do know my body. I don't tolerate many medicines well.

My neuros have been supportive of my not wanting to take the DMD's, but I think there is sometimes a general opinion we should do everything and anything to stop the MS. So, the second-guessing for me comes from that. But, I don't want more trouble either. Quality of life is important to me. This may sound ridiculous, even ignorant regarding my MS, but I've told my family, I can get a wheelchair at the local drug store, but I can't get a new liver.

I don't know if this helps, but, I guess I'm saying I don't think you're alone.

[0485c10]

Actually that is a rather common phenomenon with tysabri. A person starts Tysabri because they are scared the risks are worth it. Tysabri stabilizes ones MS enough that a person begins to think they don't need it. I only used betaseron before tysabri about 3 months after using tysabri, i was certain i should have used copaxone first...spent a whole appointment with doc discussing that.

reason for brain only mri's with tysabri is pml is in brain not spine thats what they are keeping close eye on that.

[inmoni5]

Actually that is a rather common phenomenon with tysabri. A person starts Tysabri because they are scared the risks are worth it. Tysabri stabilizes ones MS enough that a person begins to think they don't need it.

I completely agree with you on that statement. I too have re-evaluated my treatment plan and have lowered certain meds because I didn't feel I needed it. After adjusting doses and changing my meds...I have decided that if you find something that works leave it alone. lol. Because it's doing just that - "WORKING" .

Remember the old cliche "If it's not broken, don't fix it" same with our meds.

[GracieBH]

I second guess myself or maybe I just think things over and look at all the information I can find and try to make sense of MS and all that goes with it.

I am suspicious about the meds and their high cost and the insurance payouts. The cost seems to take on major increases.

I do wonder if it is the medication OR the course of a persons MS which determines the course the disease takes.
Being off meds for a month really make me think about if I really wanted to restart them.

So until I can absolutely decide not to take them I will continue with my therapy. And I will continue to look at all the information out there and stay informed.