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

[Heather3418]

The injectable MS drugs will NOT help with any of your current symptoms.  You will need to take additional medication to help with your symptoms.  Please understand that the injectable drugs do not guarantee a total absence of attacks, but indeed my lessen an attack or prevent one that may have occured if you weren't taking any disease modifying drug.

The injectables are all we have to try and fight this disease.  So until they come out with the pill form, which they feel will be within the next year or so, we press onward, to do everything we can to prevent the progression of MS.

Best Wishes Sweetheart,
heather

[gollie]

Thank You both for your posts, And wonderful support.
Essdipity, the info you sent on copaxone is excactly the type of info I am looking for
That helps alot. There are a couple other post above that helped alot as well. I have been looking up the four different durgs on some sites it gives info on them but, but its good to hear from all who uses them and if they are doing ok with them.

This also leads me to my next question, I know that it helps to slow the progress ect, but as we all know we have pain/symtoms on a daily basis that just dosnt go go away anymore, so does this mean that we would use the injection meds, Plus use different meds along with it for pain relief , or  ON or TN ect??? just trying to clarify  if the injection
meds are basicly for slower progression  and shorter relaps times. Or do they help with any pain relief on a daily basis?????   Thank You All  for your posts    
More Comments Welcome here the more the better.       Gollie

[essdipity]

Heather is so right in calling it the feeling of being punched in the stomach. For me it was rather like a delayed shock reaction with a little panic thrown in, but it was over within a day and now I'm fine. So all in all that wasn't bad.

I'm pretty sure that all the injected meds are shipped. At least mine (Copaxone), has to be done through the specialty section of the pharnacy insurer for meds that are sent, so that has involved jumping through a lot of hoops. I'm to get my first shipment on Thursday. My doctor only prescribed a 30 day supply, and I'm letting that go for this round, but my insurance should cover 90 days at a time for a reduced copay. I will work on that part soon. How yours will go depends strictly on your insurance fine print, so I can't say, but just advise you to look into all aspects.

Your 'drug of choice' manufacturer will let you know about storage requirements. The Copaxone people fall all over themselves making calls and sending brochures, booklets, tote bags and so on till you want to scream, "Enough already." I suppose they should do all that, considering the costs involved. I'm guessing the other drug outfits do the same kind of thing.

For details on how Copaxone is different chemically, please read up on it at web sites. I chose it because it is less hard on the rest of the body, it doesn't cause flu reaction, and it can be out of the refrigerator longer. The negatives are that it is every day (though just under the skin, not in muscle), it can cause some injection site reactions like stinging, etc., and also sometimes causes a quickly passing anxiety feeling. I'm not one to comment on these specifically yet, naturally, but two people here who are taking Copaxone are Heather and Amyloo. Both report things are going fine. I'm sure they'll tell you more.

The flu thing from all the others can be significant, though most people eventually adjust. I did chat with one man a couple of months ago who told me he's been on Avonex for 7 years, and still has to spend one day a week in bed quite sick from it. Natch not everyone has this. Quix seems to be doing well on it, for one.

Hope this helps.

ess

[biowham]

I'm sorry that now there is this inevitability to your future--you have MS. But at least now you're finally getting the meds and other interventions you need. Best wishes to you.

I'm not dx'd with anything, so I can't help you with any of that kind of thing. But there sure are plenty of people here who can.

E

[kitten o]

I AM NOT ON ANY SHOTS.
MY NEURO WAS P-SSED BUT IT
IS MY DISCISION. I TAKE MEDS FOR PAIN AND MY
TREMORS. I LISTEN TO MY BODY AND  I AM
LEARNING WHEN TO REST , WHICH IS NOT EASY
FOR ME. I HAVE ALWAYS BEEN VERY ACTIVE.
I SEE MY MD FOR MY MEDS,  MY MD IS THE BEST.
I READ ALOT, AND I AM ON THE WEB,
KINDA  EDUCATING MYSELF.
YOUR FRIEND KITT

[gollie]

HI there, Thank You for your kind words and support

LATW  so im a week behind, I hope things will even out soon for you! Avonex has one nice option that i like already , its only once a week..  

IM also wondering might my primary care office do the injections for me without a copay to go in there. has anyone done this? Because im not so sure i will be able to do my own injections its kinda makes me prettty squimish. jsut to think about  it and also very often i get shaky hands and muscel spasam in hands and fingers  which dont always make for good coordination in that department. as you all my have guessed from my typing already lol.

Kitten and all , the the injection meds somthing that we need to stay on all the time now?
and do you only go off them if having side affect?   if so kitten do you use somthing else in place of copaxone?       Im glad to hear your doing well!!!!  Gollie

Oh and as some others have stated already, I do not plan to go to a public support group
MY nero strongly suggested it so i could get myself educated about ms all all that goes with it, but i do not belive than i would benift in a public group, anywhere near as much as i have benifitted here on this community.  This is my support group!!  Gollie