I am frustrated!

I was told probable MS in 06 dx in o7 and started Beta. it was horrible for me. I had severely elevated liver enzymes. set clinic records. It was scary. I stopped and was placed on copaxone. I waited more than 2 weeks past the beta to give my whole body and liver a break. Started on Copaxone and had lots of issues from the start.

Lumps, bumps, itches, IPIR a few times. dull needles, plungers that wont push, sensitive skin. EXTREMELY dry eyes and skin since starting. I have the rare side effect of fatigue with it. I have just not been happy with it, BUT...I know that it is my only CRAB hope right now. I have been shooting everyday since 08/09/07.

My last MRI showed 2 new lesions and a glioma! I have had the glioma for about a year, but no one felt it worth mentioning since it was so small. Anyway, for the last few months, since my last flair, I have really had a motivational issue with taking my meds! I do take it everyday. its so rare that I skip. I did skip my burfday.

I need to get more motivated. Mental attitude is soooo important. I need to feel good about taking my meds! I am having an MRI on July 12, and that will determine if Copaxone is working for me. If I dont have any more lesions or probably if I do, we are going to try to rescue my copaxone relationship.

Can you help me find ways to get happier, more positive, and upbeat about taking this stuff? There are just too many days that I want to lay the needle down and go bared bottomed into the world of MS.

help me!

Siss boom bee, kick em in the knee.
Siss boom bass, kick em in the..... er..other knee.

Sorry, couldn't resist. The answer is simple for me, D, if it aint working, stop taking it.

Sorry, I wasn't much help..

Well....motivation comes from dealing with the anger and learning to forgive and love yourself.

Sorry to be blunt this afternoon....

BUT back to the cheerleading...

Dejibo, Dejibo...Go Go Dejibo!!!

Okay, here is my attempt to be a cheerleader:

Copaxone hurts and burns for sure
And I don't want to shoot up anymore
But if I set the needle aside
I may end up on my bare behind

I know-- that was really bad. I understand your frustration. I was recently thinking that maybe I should try copaxone again, but then I started thinking about how it made me feel and the problems I had with it. I think you should hold out until your MRI appointment and then make a decision. If it is not working, it does not make any sense to keep using it.

You could also try not taking it for a week or so and see if fatigue and eyes improve.

The glioma does not seem to be very good news! Have they done a biopsy to be sure it is not just a MS lesion? Did you have lesions the first time, when they discovered the glioma (but didn't mention it)? Has it grown in the last year?

Have you had any relapses? Do you even know if you would be categorized as "Probable" RRMS or a more progressive type?

Has the MS dx been firmed up now, with the new lesions? Do you know if they were gad-enhanced lesions, or T1/T2?

There are a lot of us that can't take these meds, Dejibo. I have never taken them, and am doing ok. It sounds like you've given it your best shot (pun not intended).

July 12th is just around the corner now, so depending on how you've been doing (with relapses, etc) since starting C, I think I'd just stick to the program until after those results. You haven't been on C for very long either, and it does take time to kick in.

If all else fails, there's always LDN. It's helpful for cancer too . . .

Cherie

Ditto what Cherie said...a glioma is nothing anyone competent would ever ignore, and it must be worked-up. Do you have the MRI report, and would you mind posting the text?


Cherie - there's not much chance of an MS plaque being mistaken for a glioma.

Thanks Rex.

Cherie

It's not a particularly reliable source, but according to Wiki"

"Gliomas are further categorized according to their grade, which is determined by pathologic evaluation of the tumor.

- Low-grade gliomas are well-differentiated (not anaplastic); these are benign and portend a better prognosis for the patient.
- High-grade gliomas are undifferentiated or anaplastic; these are malignant and carry a worse prognosis."

. . . "low-grade gliomas grow slowly, often over many years, and can be followed without treatment unless they grow and cause symptoms."

http://en.wikipedia.org/wiki/Glioma

How do they "evaluate" the tumor, Rex?

Cherie

I'm sorry you're having such a difficult time...I wish I could offer some advice but I'm afraid that I am going through about the same thing. I stopped my copaxone shots about a month ago (neuro doesn't know) because I got so tired of the pain and muscle aches I got from them. I go back to the neuro on the 11th, he probably won't like that I stopped but oh well. It can be so disheartening having to take meds when they hurt or make you feel sick and all you have is faith that they're helping.

I'll say an extra prayer and send good vibes your way.....wish I could do more...just hang in there and know we're all here for you!

Barb02 I love your creativity! That was great!!

Okay Dejibo, you have a count down, just 15 days to find out if this is working, because if it is, you can't stop now.

Think 99 bottles of beer on a wall and count backwards. So tomorrow, its just 14 days to find out if this is working, because if it is, you can't stop now.

You can press and not have big lumps anymore so you are managing it better.

She asked for a cheering squad!!! She is going for it because this is all she can take right now and it is important to her to try to slow the MSmonster.

Go, go Dejibo!!

Gliomas can be benign and very slow growing, my mom has one. Lets hope it is just that.