I need a cheerleader

suzyqz_2007 · 06-27-2008, 12:20 PM

Quote:

Originally Posted by Dejibo

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!

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!

starfish · 06-27-2008, 01:59 PM

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.

kingrex · 06-27-2008, 02:17 PM

Quote:

Originally Posted by starfish

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.

soxmom · 06-27-2008, 02:54 PM

Lets be gentle people

......she asked for a cheerleader not the
grim reaper

.....

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

Curious · 06-27-2008, 02:58 PM

lady_express_44 · 06-27-2008, 03:05 PM

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

Dejibo · 06-27-2008, 03:17 PM

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.

NurseNancy · 06-27-2008, 06:22 PM

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.

starfish · 06-27-2008, 06:44 PM

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!

Dejibo · 06-27-2008, 06:45 PM

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.

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