Gollie Dx's With RRMS today

[gollie]

HI all I havnt been on in awhile, wasnt feeling very well or up to typing much.I am abit sad today but by no means suprised. Wanted to let you all know I had my nero appt. today, and was DX's with MS.(remmiting relapsing) Nero has given me a list of a few drugs that he wants me to reserch and dicussus with other ms ers to get their opions on them and what they have been using, so i can make an informed and educated decision on what one i would like to use.  He also would like me to join an ms support group, he thinks it will help educate me on ms,   I never did mention to him how much i have learned from the wonderful members on this board. OH and many of you will be pleased to know that i wrote a symptom time line on good advice from members here, and he actually sat and read it with me.
when he finish  he said Excellent!!!  and asked if he could keep it in my file.WOW
for those of you who dont remember me  quick recap:
sept 07 Mri Showed brain spots (lesions) with out contrast
had a ton of blood work done for other things  all clear
EEG normal/ some slowing noted
Ver abnormal
BARE abnormal
Somatosensory evoked response upper and lower, abnormal on both counts.  Neros says some of that is due to my back surgeries , but some due to ms as well.
he is not making me go threw the lp, and will see him again in 3 weeks he did order a more blood work B12 ect.  but has dx s the ms so i can get started on meds.
he says next appt we will be looking at getting another mri with contrast.

I didnt read alot of the post on the meds before, mainly because i wasnt sure that i was going to be dx s today. I will go back and read post related to this,  but i have a bad stress head ache right now
and having all i can do to type this post.
Mean time these are the med I would love to hear your personal experiences with them likes or dislike  ect.
Rebif
betaseron
copaxone
avonex
it would be great to hear and would help me alot, Its pretty scary knowing i have to start injecting myself . So i figure if doc wants me in support group i couldnt think of a nicer place be than here.  I learned so much from here in a very short time , from learng how to communicating with my docs, to writting a time line, to getting the proper testing!!!!! and an actual DX      THANK YOU THANK THANK YOU  ALL.   I know i have along way to go in leaning more about this and i have every confidence that i can find it here.        looking forward to hearing you all    Gollie

[Amyloo]

Hi.  I also take Copaxone; started about one month ago.  If you have anxiety with the whole "shot" thing (and really who wouldn't) they have an "autoject" machine that you load your pre-filled cartidge into.  You never see or touch a needle, and you only push one button and the autoject dispenses the med into your skin.  I never feel the needle, but about ten seconds or so after it does start to burn a bit.  Heather discribed it as a bee sting feeling, she's right.  It can welt up and it can hurt; for me different areas hurt worse.  It's about five to ten minutes out of my day and possibly years of better living down the road.  I too picked copaxone rather than an interfeuron because of less chance of side effects, but that is just me.  I'll answer any questions you may have; just let me know.  God bless you, Amy

[MCBCON]

My grandfather was half Irish and half Scottish.  He told the following joke:

The irishman in me makes me want to drink a bit; the scottsman in me just does not want to pay for it.

[Heather3418]

You are right about the depression and suicide if you are prone to that anyway.  I was warned about that when I took Avonex, since I am prone to depression.  Luckily, I think I was depressed over the flu-like side effects, that in my case, never went away.  I hear others have better luck with Avonex and Rebif.

I guess when your name starts with Mc, we might be more prone to weird things...whatcha think fella?  Maybe?  LOL

Heather

[MCBCON]

Hi Gollie,

I have taken both REBIF and Copaxone.

One of the side effects listed for REBIF is suicide.  Well, that was one side effect I barely avoided and had to go off the drug.  If you decide on REBIF be closely monitored.

Copaxone is what I inject now.  Seems to okay, but one never knows if it is helping really.

[sllowe]

Hi Gollie,

I'm so sorry about the dx, but glad you know what you are looking at now.  There are great threads on here about the meds, and we'll have to bump up a few for you.

I was dx'd last year, and after doing my own research, decided to have the Neuro decide for me.  It is really hard to know what is the right one, since there are no guarantees with any of them.  There are studies though that show to prolong the damaging effects of MS w/these meds.  I was put on Rebif, but not due to it being a better med than the others.  Two Neuro's did not have a bad thing to say about any of them.  

Gollie, another thing is that there are no guarantees w/or w/out meds.  This is what starts to confuse your mind.  You sound strong w/knowing what you are facing, and I wish you well with your decisions.  

You may not see the med on the pharmacy list because it's in a different drug tier.  Your Neuro should submit this for you, once you decide, the script and paperwork is submitted, and you will be contacted afterward.

I did very well w/the Rebif injections, it's a very small sharp needle, and I did not use the injector.  My suggestion is to get through the part of accepting the MS, then move forward w/the meds, once you are ready to start treating yourself for your future.  

Like Heather says, these meds will not make you feel better (didn't me anyway).  I think it's a sad misconception in our world, and w/this and some other diseases, and the course they give some people.  For some, unfortunately, you don't take a med, and get better.  You just have to trust and pray you are one of the ones that it helps to slow down the disease if progressing.

We are here for you, to help, and pray for you, while you make your way through,
be well,
SL

[gollie]

Wow That was quick!!!  Thank you for letting me know that, Im glad im asking questions in here and reading.
Now at least I know I will have to budget the co-pay for injections as well as other meds.
You seee  lol I am the Mother of budjeting money..   Just a good thought for limbo landers to keep in mind as well, so if they get a DX  with this, they wont get hit with hidden cost they didnt expect.

Thank You agin Heather!!!!!!!         Gollie        All comments Still welcome