An Experience of Mine to Read - A Lesson Learned

[coco31]

Hi all,

I recently went from 143lbs to 119lbs.... In a very short space of time, probably from so many relpases and probaly from the stress of a diagnosis. Shortly after Christmas my neurologist discontinued Copaxone becuase the injection sites almost as if it was not being absorbed. I had incredibly angry looking itchy patches.

I stayed off a DMD for almost 3 months and thats how long it took for this flair up to go down. When it was time to revisit Neurologist 3 weeks ago I pleaded for Tysabri, having fully educated myself on all available DMD's. My sole goal in the appointment was to obtain Tysabri so that I could push a bit of MS out of my life and by this I mean: No daily injections (a constant reminder that I have MS and I have to treat it), the reminants of the syringe in my house, in my fridge, sharps bin in my press. Filling the prescription at the pharmacy. These were all things I wanted to banish as a mechanism to think about having MS a little less.

I have a really down to earth, energetic, honest and helpful neurologist and flat out he said he was not willing to prescribe Tysabri at this time despite my pleas (and probably tears) and here is why: I have MS for what will be 1 year (next week) (I'll do a post: A Year with MS that day! wait for it, I'll make it entertaining lol). . .  .And despite relapses, bad days and incredibly difficult time excepting the diagnosis - I AM STILL ME. There is nothing different about me today then there was last year or the year before. I may have lost weight and have slight visual loss in 1 eye but really does it warrant the possible risks associated with Tysabri? I guess not and now as I approach the first year in my life of having MS I am now able to look back and see how far I have come. I am thriving. I look healthy, I feel healthy, I am positive and active and more aware and educated (thanks to many of you along the way). I am not disabled and nor do I feel unwell in any way the majority of days. I am fortunate to have a wonderful family and loyal supportive boyfriend.

Now I must say I came out from my appointment red with anger ready to throw a fit. I was going to hear off nothing but Tysabri! I even doddled with the rebiff prescription for a few days, telling myself that I wouldn't take anything if I had to self inject. Stupid neurologist!!!!!

My 30th birthday looms (like a dark clould) and maturity decided to set in this week and see the sense in the advice I was given by the professional I have come to trust..... So here I am on my second Rebif injection and here's how its going:

Firstly: I am on an introduction course (so its only .8mcg for the 1st 2 weeks so this may be unreliable)

> I had no pain manually injecting (in fact I selected the leg, and I had to double check the needle was in) I couldn't feel it at all! I think the needle size is much thinner. Wow.

> I had no immediate or subsequant area of swelling.

> I had no other side effects.

Please Lord this pleasent experience will continue...... Long may it last.

Moral of the story. We might not always hear what we want from our neurologist. We might not like the way the deliver their opinions (after all they dont have MS themseleves) but we (and in particular younger MS patients) have to take the mature approach bite our tongues and listen because from that we might learn......something totally new.

On a final note: Whahooooo to all the funding for research into CCSVI allocated recently. Sometimes when we stand up and dont bite our tongues we get somewhere too!          LOL!


Sharon

[Tiredofbeingnumb]

Thanks for your post. I think you made a good point about putting feelings aside and really listening to what your doctor says. I think that if people shop around enough, they will find a doctor that will do what they want (Kanye West's mother comes to mind), but it is important to realize why a doctor does or does not want to do something.

Interestingly enough, I had the exact opposite issue. I was diagnosed in Jan of 2009, and in August 09, my doctor wanted to switch me from Betaseron (that we both agreed wasn't working) to Tysabri. Honestly, that drug absolutely terrifies me. But, I did my research (they mailed me a bunch of stuff on that drug), I read all of the info, and then went to my appointment with the questions I had written down. Even after reading the info and talking to my doctor, I still didn't want the drug, but at least I made an educated decision. I asked him what my other option was, and he said Copaxone. If one interferon didn't work, it didn't make sense to try another, but Copaxone isn't an interferon. And guess what, it is working!!I am not exactly sure why he wanted to immediately go to Tysabri (it is possible, since most of my lesions are in my spine, and that I had already had several relapses, he wanted to be more aggressive) but I didn't want to go to the most powerful drug, if another drug was available. I call Copaxone my "bide my time" drug. I am REALLY excited to hear that we may have an oral drug on the market by the end of the year, but I will wait a few years still to see how people handle being on it.

So I guess my point is to have a good relationship with your doctor, so that you can discuss things. If he doesn't want you on a particular treatment, then he should explain why, and same goes if you don't want to be on a particular treatment.

[Sarahsmom46]

Amen to your lovely post.  I am older and should be more mature, but sometimes I have thiese little battles with my doctors too. I hate questioning my doctor because ultimately learn that they are right.

That was a good lesson learned and for someone your age it really does show your maturity is above average.  

I'm sorry to hear the copaxone was unsuccessful, but hope the Rebif works for you.

Julie

[sllowe]

Hi Sharon,

So nice to see you!

I thoroughly enjoyed reading your update and how it really puts things into perspective! Especially when we are told flat out "no" and we stomp off kicking and cussing and in the end the Dr. knew best as far as we know.

I wish you well on the Rebif. I've been on it since 07. I stopped a couple times for one reason or another but I do well on it. I'm always symptomatic and I have had mild bouts of relapse, but completely bearable compared to the one that layed me out 1st yr of dx.
I hope it's the meds and that it works that way for you too.

How's your weight, stable?

(((hugs)))
shell

[addicted2harleys]

Hi, Sharon-

I liked your post.  ;0)  It can definitely be good when you find a moral, huh?  I am happy for you that you found a DMD that seems to work for you and it sounds like you got one of the better neuros.  Good for you!

Here's to you for acceptance and learned experience!

Addi