I need a cheerleader
 

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! :eek: 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. :D

Sorry, I wasn't much help..:hug:

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:eek:

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. http://i173.photobucket.com/albums/w...eerleader3.gif

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

They remove it surgically and then do the pathology; a spinal cord tumor must come out. Then they may do post-operative radiation therapy.

Thanks again. Thanks for coming here too, and sharing your expertise!!

I sent you another PM, BTW.

Dejibo, it sounds like the priority right now is getting that checked out. :hug:

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!

:hug::hug::hug:

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.

Although I know you mean well, your mom's glioma really has nothing to do with this girl's. I'm guessing that she's a lot younger than your mom is, and that has a lot to do with the rate of tumor growth. Is your mom's glioma in her spinal cord or her brain?

Tumors can become malignant, even if they are benign at an early stage...especially in younger people.

Lets be gentle people:o:o ......she asked for a cheerleader not the
grim reaper:rolleyes:.....

D, I hope you can continue to do what you need to achieve the best
health you can have. :hug::hug:

I did not mean to make this about the glioma . . . and hoped they were wrong, of course. I have heard of mistakes like this with tumors.

However, since the MS dx is not confirmed, and the glioma is a concern, I do think that should be the focus right now. Perhaps it is for Dejibo, but from this posting, it seemed to be less of a concern then continuing on with Copaxone (for a disease she is not sure she even has).

Dejibo, if it was me, I would be focusing my energy on getting to the bottom of the glioma issue. It may very well be not a big concern . . . and you probably know more then what is written here . . . but just as long as you are not letting them blow this off.

If the Copaxone is making you feel terrible, and given the other circumstances, I personally don't see the point in continuing. I think you need to prioritize your energy right now.

I'm sorry if this comes across as negative. It is really meant as genuine concern.

Cherie

OK, maybe the way I worded my request caused confusion. I had suspected MS in 06 Was definitavly Diagnosed o7. I had 12 lesions on first MRI 14 on 2nd MRI and started on Beta. I guess the glioma was spotted on that MRI, but no one mentioned it. It was just the most recent MRI that they said it was completely stable, non growing, but its in such a horrible position that to go after even a tiny bit of it, could seriously cause seizures, headaches, and abnormalities that I dont currently have. Since it isnt growing, is very tiny and not bothering me, we chose to leave it alone.

So. I dont have a cancer (so they think) I DO have MS. I have had multiple relapses through this year. I have a dropped left foot, and spastic issues that make me insane.

I have been faithful about taking my meds everyday. I am just tired. I am worn down. I am tired of the side effects, and tired of feeling like I am in a run a way train.

July 10 is my MRI I dont know where I got the 12th from. its the 10th. its a full day for me. immediately after I have my follow up exam, and they will tell me if the copaxone is working or not.

So, I need a cheerleader because I am tired. I am really running low on reserves. I am not angry, and dont need to turn myself inside out. I am just tired. I sleep ok, but I am just tired of doing MS stuff day in and day out. I want a new disease.

So, thanks for all the good sis boom bah... I needed that.

i do copaxone too but havn't had the problems you do.
i can understand why not feeling well on a daily basis wears you down.

try to hold til your mri report.
would you consider tysabri? really works well for some.

i had A LOT of local side effects when i first started C. with time they abated.
i also experimented with the depth setting of my autoject and found when i went deeper that those effects got much better.

icing also helped me.
it's a daily reminder of MS but for me it was worth it not to have interferon side effects.

post here and we'll get you thru this.
hang tight.

My mom is a spry 82 y/o and it is in her brain. They only check on it every 2 years and the growth is negligible. It was found incidentally after she took a fall on a bad sidewalk at the VA hospital.

She was very upset at first, of course, but as time goes on, she is fine, and she has the second year confirmation. I think they expect she will outlive it if you know what I mean. I am glad her doctors have given her that peace of mind.

Okay, back to the shish boom bah stuff!!!

Okay Dejibo, you have a count down, just 13 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 12 days to find out if this is working, because if it is, you can't stop now.

Its great that you can find out your results so fast. Whatever the results, you will make the right choice for you. We all do. Go go Dejibo!!

There are some very creative, clever people on this forum, with way better technology skills than this digital immigrant has. So put those brainy cells to good use!

I am a manual shooter. I find that holding deep pressure for about 15 seconds post injection drastically reduces the lump. I did have a couple of minor IPIR, but went on to shoot with no more. its been awhile since I had one.

Thank you to all for the wonderful support. you guys rock. :grouphug:

Thanks for the explanation.

I am very happy to hear they are keeping a close eye on it, and it does not appear to be a big concern right now. :hug:

July 10th is even sooner. :) You can do it! http://i173.photobucket.com/albums/w...eerleader3.gif

Cherie

So tomorrow, its just 11 days to find out if this is working, because if it is, you can't stop now!! Go go Dejibo!

Good Luck - sending great possitive vibes your way! I haven't ever been a cheer leader but I can shout and carry on with the best of them!

Whooo Hoooo! Good Luck!

Come on Dej! It's ONLY 12 days to the MRI....you can do it! You don't need us to cheer you on!

I'm a C user too! And I just tell people that a bee sting won't ever phase me again!!!

You are a strong woman. You will make the 12 days and then how many more til the doctor sits and talks with you.

You are strong.

I'm not a medical professional(at all), but when I had my first MRI, I had a huge lesion (active) in a non-typical MS area. There was a lot of confusion by two neurologists on whether or not it was a tumor. They did a Lumbar puncture and saw two o-bands and decided because of that they were going to treat it as MS, gave me steriods and started me on Avonex. My follow up MRI showed the large 'spot' on the first MRI had decreased significantly, so because of that they were satisfied that they had made the correct dx of MS instead of a tumor.

Anyway, I don't know if this differs from glioma, because that wasn't mentioned to me just the possibility that it may be a tumor, but wanted to share in case it may be related. They were discussing the possibility of a bioposy of the 'mri spot', which was really freaking me out. I was thrilled to get my MS dx after that. :eek:

Hang in there! Sending many prayers your way for this difficult time.

I go for my eye plugs today! woot! one big goal out of the way and 9 days left till MRI time.


You guys scares me! i asked for some cheerleading about my meds and a way to keep poking till my MRI and everyone jumped onto the OMG she has a glioma band wagon. :mf_swordfight: My Glioma was not the issue. My lack of motivation, and my exhaustion with the whole routine is. I was feeling like I had just reached the I HAVE HAD ENOUGH stage of my run :deadhorse:

I am feeling some better. Thanks for all the attempts at cheerleading.

:Red eyes: now, I am off to get those eye plugs!

A good friend would always send me I timely email...

It would just say...Everyday Pete.......

Meaning he was there with me ..Prayers and thoughts everyday.....

Same to you..

Dejibo
I've got to ask what are eye plugs and what will they do for you?

I got tired of the pain of shooting myself and the side effects were not easing up. I tried 3 of the 4 injectables. I stopped and my doc agreed that the possible payoff wasn't worth my suffering.

Oh, that's bad cheerleading, sorry. I just want you to know you are your best advocate and everything has to feel like the right thing, for You.

:hug:'s

Yeah! Eye plug day! I hope you start feeling the change very soon!

9 more days to go until your MRI and decision about copaxone!!!

all plugged up!

Your tear ducts in the bottom corner of your eyes can become dilated, and cause the moisture in your eyes to keep running into your sinus. My eyes are extremely dry! all the drops and gels keep sliding right into my sinus, so they dont stay in the eye to do any good.

I got a training set. they disolve after 4 days or so. They plug them temporarily to make sure your problem is solved. IF it works, they put real plugs in. If not, they plug the top ducts as well.

So far these seem to be doing a nice job! My poor eyes have been so dry, and so irritated that I have been miserable.

so, I have a headache from the drops they used, but other than that. one big step over with.

Rah rah ree, kickem in the knee.

Rah rah raxx, kickem in the Copax.

Good luck to you!!! We're pulling for you! :hug:

Dejibo! Dejibo!
Yes, she can;
If she can't do it;
Nobody can!

She shoots onces a day
To help the lesions stay away

OK, so I was never the cheerleader type but you have my support! I hated taking the shots at 1st. So I started a routine of doing the shots in the evening before bed and then meditating on how this medicine was helping me. I even imagined the C attacking the lesion, kind of like a silly video game. For me using this imagery really helped especially after I had my 1st major IPIR. If it wasn't for that fact that this med is supposed to help me and prevent more issues, I never would have picked up that needle after that IPIR.

Try using mental imagery and see if that helps.

This may cheer you on. I was dx in Jan 06 and started C in March 06. I went through serial attacks for the 1st year and then they started getting further apart. I recently had my 1 year MRI and I had NO changes on that MRI from the previous year. That is my motivation to stay on C. (Of course, I had an exacerbation of a spinal lesions shortly after that MRI. LOL:rolleyes:).

Keep up until you have the MRI and take it from there.

10 more days (I think) Dejibo! How are you doing? Are you still taking the shots? How are the eye plugs working for you?

Counting down . . .:hug:

Count down!! 7 more days!!! Just one week longer!! You can do it! You are almost there!!

Woot! Finally some cheerleading for yas!

Since we been talking, I know you are continuing to shoot despite your trepidations... and I know the eye plugs worked but have now dissolved = eyes are dry again :(

Hang in there, Dej! You have faced much worse in your life and can get thru all this. Permanent plugs next week, MRI coming up, chiro for your back!

I love yas!! :hug:

Just 5 more days to go!!! Yahoo!!

Just 5 days!!!! You can do it! Easy as pie.

How are you doing Dejibo?

i'm a little late on the uptake here.
but i wanted to say i'm glad you got the plugs done.
i hear they can be very successful.

i'm here to tell you that you can make it thru one day at a time.
the sun always comes up and things seem brighter.
try to always look for something positive.
you can do this.
good luck.
keep us posted.

Thanks. that is better cheerleading.

I have had some sort of a tummy bug the last few days. yeck! My vision has gone wonky on me. Like a camera flash bulb has gone off in my face, and I cant get the spots to calm down. my starter eye plugs dissolved (they are supposed to) they give them to you to make sure it solves your problem. they did! I get a new permenant pair on Wednesday at the crack of dawn. Seeing Chiro today, and MRI on thursday. oh joy! I am so nervous about shooting the tube. I HATE being locked to the table. I am anxious to hear the results. glioma had better be behaving itself. Ms better be on the run.

Thanks for all the support. 3 days till MRI and results time.

I am so glad that the eye plugs worked. That's awesome and I am sure such a huge relief to you.

With only 3 days left you can certainly do the shots for only 3 more days.

As for the MRI, maybe you can have either your neuro or PCP prescribe something to take before hand. I always go a little sedated as I am so claustrophobic. I did have just a spinal MRI done once and did ok with that. But, put a cage around my face and clamp my head forget it. I thought I would try to be brave once in my determination to accept the MS dx and knowing I would have to get these done regularly. Well, after pulling me out of the tube for the 3rd time, they had me put a Xanax under my tongue so they could get the MRI done. So embarrassing! From then on, I go sedated.

Hang in there! We cheering for you!