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-   -   Back on the C (https://www.neurotalk.org/multiple-sclerosis/126135-back-on-the-c.html)

Debbie D 06-28-2010 09:18 PM

Back on the C
 
Got a call from my neuro on Saturday...my MRI showed only one new lesion, and he believes it is because the MRI he uses is a 3T, and my old neuro's isn't.
Said there was no enhancement...I asked so now what?
He said that since my thyroid numbers are not consistent, and he found it to be enlarged, I need to follow up with my pcp. Doesn't think it's a good idea to go on the interferons with this problem until I know what's up.
I asked, so should I go back on Copaxone? He thought it would be a good idea. I said, "I've been off of it for 4 months with no new lesions...why go back on it now?" He gave the argument that it prevents new lesions...blah blah blah...
So, reluctantly, I am going to go back on it..only because my DH wants me to. Otherwise, screw it...:mad:

Dejibo 06-29-2010 07:00 AM

I too stayed on Copaxone much longer than I wanted, and only because my DH was freaking out after speaking to the MDs. I say if you slide anyone into a 2T machine, and created a treatment plan of ANY meds, then a year later used a 3T machine, you ARE going to see more lesions! its like using a stronger magnifying glass to look at a painting.

I am sorry you have a new lesion. That stinks. Hugs and prayers from me. :hug:

ewizabeth 06-29-2010 07:04 AM

I hope it will be better this time around Debbie. :hug:I'm sorry about the other lesion they found.

SandyC 06-29-2010 07:52 AM

Ugh, hope it is better too Deb. :hug:

barb02 06-29-2010 08:18 AM

Hope it goes better this time too.

LuvSunflowers 07-03-2010 01:25 PM

That's so true about the 3T machine. I've only had 3T MRI's. I have many lesions although I suspect most are from a long history of migraines. Anyway, when I was diagnosed last July after developing double vision, every neuro I saw freaked out when they saw my MRI. They acted like I would be in a wheelchair within one month if I did not start REBIF ASAP. Anyway, I started the Rebif two months later and I have only been on 1/2 dose due to a decreased white count. July 15 will be a year and I have no symptoms and have had no relapses and my new MRI showed no change. Anyway, I seriously doubt any of this is from the 1/2 dose of Rebif!! Now if I only had the guts to stop the Rebif!!

Quote:

Originally Posted by Dejibo (Post 669758)
I too stayed on Copaxone much longer than I wanted, and only because my DH was freaking out after speaking to the MDs. I say if you slide anyone into a 2T machine, and created a treatment plan of ANY meds, then a year later used a 3T machine, you ARE going to see more lesions! its like using a stronger magnifying glass to look at a painting.

I am sorry you have a new lesion. That stinks. Hugs and prayers from me. :hug:


Debbie D 07-03-2010 02:00 PM

Isn't it frustrating? I don't feel I need to be on anything...there really aren't any signs of increased disease. Besides, I've been off of shots for over 4 months and no brain glowing things going on...
I'm only going back on because my DH wants me to, and he has been beside me the whole time helping me and letting me cry and whine. He deserves me to do what I can, I guess. Blech!:mad:

Snoopy 07-03-2010 02:26 PM

Quote:

Originally Posted by Debbie D (Post 671713)
I'm only going back on because my DH wants me to, and he has been beside me the whole time helping me and letting me cry and whine. He deserves me to do what I can, I guess. Blech!:mad:

Debbie, your husband should listen to what you want. I know, it doesn't always work that way :(

My husband has always told me whatever I want to do is fine with him. The last neuro appointment he had gone to, my neuro and I were talking about the DMDs. After that conversation my DH was more concerned with me taking a DMD than not taking one.

To be fair, it was the discussion on Tysabri that concerned ny husband :p

Dejibo 07-04-2010 08:19 AM

I just went thru the exact same thing with MY husband. For a year, I cried about the side effects, the dents, the dry eyes, and so on. I said I wanted to quit. When I spoke it out loud to the MD they told me about how serious it was to go without, and the conversation led to talk of how disabled I could become, and it scared my DH. He had visions of me being in a w/c in a year. They also told him that going off the meds put me at a much greater risk for a big flare, and I should be prepared for that.

After a year of showing him side effects, pointing out literature, and showing him that I am not making this choice based on an emotion, but rather solid hard evidence, and research, he finally agreed to look at what I was saying. I pulled out the package insert and showed him that almost every sx that was listed as a side effect has plagued me.

While we were tangled in it I agreed to not stop it while we researched it, and figured it out, but come my b/d last week I had reached the point of "with me or not, I am stopping."

I am NOT reccomending you follow my footsteps, I just wanted you to know how much I understand where you are coming from.

Debbie D 07-04-2010 01:40 PM

That's the thing, Dej..I don't have any side effects. My neuro told me to put the autoject at an 8, and ever since, no lumps, welts, or anything.
I am just tired of it, that's all...but I will do it. It's the one DMD with no real "effects" aka flu feelings, etc. And it's not an immunosuppressant, which I can't take until I go to the PCP and figure out what is going on with the old thyroid...
Thanks for all th input...


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