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

[LLWB]

Sorry that the dx wasn't better, but certainley an effecient neuro. It's good that he's going to get you started on meds soonest. Lots of other more knowledgable than I am, but you can learn so much on here..Hugs & prayers............

[essdipity]

Hey, girl, we're here for you. You'll go through a lot of emotions before 'coming out on the other side,' and that's okay. I'm in the same process, just a bit further along.

My doctor suggested I look on the National MS Society web site for info about the med options (which I already had done anyway). Any site is good that is not trying to 'sell' but merely informing you. Take your time, and try to see which one matches best what you think you can tolerate. Copaxone is different from the others, but it too has side effects. The drug companies are very helpful and will send a nurse to you to help you learn to inject. Of course the meds are unbelievably expensive, so I hope you have good insurance. If money is a problem, they have programs to assist you, so don't let that be a factor. And remember that if the med you select proves difficult you can try another one. Everything is not riding on this one decision.

You are right, this is a great support group! I too have learned so much and continue to learn, and I'm very grateful. I'm glad you're staying here too.

ess

[doublevision1]

I too am sorry about your diagnosis.  I got mine 4 months ago and remember how sad and hopeless and panicked I felt that day.  Like you, I wasn't shocked, as deep down as I have believed for the previous 18 months that it was MS.  Still, to finally have the confirmation, was scary.  I hadn't been suffering badly like a lot of others on this board, so for me the dx was NOT a relief.  But I can say that after 4 months, it is less scary and becoming more a fact of life.  

For me, what has helped is allowing myself to open up to a few close friends about it, and, having the support of my strong, compassionate husband.  I have not disclosed widely, and don't know whether I ever will.  Don't feel rushed or pressured to do this if you're not sure.  I have opted not to attend a MS support group, it's just not my thing.  This board has been more helpful than I could have imagined.  :)

There is lots of good information out there, including on this board.  The trick is, not to get saturated with it.  I used to make the mistake of doing a lot of my MS research at night, before going to bed, then I'd lay awake for hours dwelling on it.  Now I do my reading in the day and just try to relax in the evening, enjoy my time with my husband and talk about the many interesting things in life that have nothing to do with MS or being sick.

I start Rebif next week.  I'm also not thrilled at the idea of injecting myself but have a lot of hope that it's going to help me control this disease.  I will give you my opinion once I've been on it awhile.

I wish you lots of hope and peace of mind at this tough time.

db1

[monotreme]

I am sorry to hear of your diagnosis, but at least you are out of limboland.

Now you can work on taming the MonSter.
Elaine

[Rena705]

Honey...I am so sorry to hear of your diagnosis and it's easy to say at least you are out of limbo land but I can relate to the waves of different emotions you are apt to feel in the next few days.

Please remember that we are here for you, to help you work through those emotions and help you make the adjustment to being a person with Multiple Sclerosis.  You can now get your meds all straightened out and the ones that are on the meds here I am sure will be a great help!  I hope that it all works out for you so that you can now move on with your life!

Let us know how you are making out gollie ok?  We care more than you can imagine!

Lots of Hugs,

Rena

[young at heart]

YOUR POST MADE ME CRY,IT WAS A YEAR AGO I WAS DX'D OR SHOULD I SAY REDIAGNOSED.

PLEASE REMEMBER WE ARE HERE FOR YOU.

EVEN THOUGH MS WAS IN YOUR MIND,THE ACTUAL DIAGNOSIS IS A STICKER SHOCK,YOU'LL HAVE MANY EMOTIONS RUNNING THROUGH YOU,PLEASE TAKE TIME TO ABSORB AND TIME TO GO THROUGH THE EMOTIONAL PROCESS.

NOW FOR THE MEDS, THE ONLY ONE I HAVE BEEN ON IS ,IS REBIF, I HAVE BEEN VERY FORTUNATE NOT HAVING ANY SIDE EFFECTS,I TAKE TYLENOL,ALEIVE OR IBPROFEN BEFORE MY INJECTION,I DO IT BEFORE I GO TO SLEEP THAT WAY ANY SIDE EFFECTS I SLEEP THROUGH,ITS INJECTABLE WITH AN AUTO-INJECTOR RIGHT UNDER THE SKIN 3 DAYS A WEEK,I DO MINE SUNDAY,TUESDAY AND THURSDAY THAT WAY I HAVE THE WEEKEND OFF.

COPAXONE IS UNDER THE SKIN ALSO BUT 7 DAYS A WEEK

AVONEX IS THE SAME AS REBIF BIT THAT GOES IN THE MUSCLES ONCE A WEEK(OUCH)

BETASERON I DON'T KNOW MUCH ABOUT.

PLEASE LEARN AS MUCH AS YOU CAN ABOUT THE MEDS.

THIS IS A PERSONAL CHOICE.

MY NEURO TOLD ME TO GET INFORMED AND THEN PICK,BUT HE PICKED FOR ME.

PLEASE TAKE TIME FOR YOURSELF AND REMEMBER MS IS LIVEABLE.

SENDING YOU HUGS

T-LYNN

[Heather3418]

I am so sorry to hear about your diagnosis.  Now comes your greiving period, which seems to be what all of us go through, when we finally hear the words, "You have MS."  At first we are glad for finally having a diagnosis, then we go through the feeling of being punched in the stomach.  I am so sorry honey.  I am glad that you don't have to go through this alone...dont forget you have US...always.

As far as the medications, you have to do some research and decide for yourself.  I hate to pass along my experiences, since I do not want to sway your decision either way.  I have tried the Interferons and they work well.  I am on Copaxone now.  But it's a decision you have.  What ever suits your daily schedule, as far as daily injections or once weekly, or every other day....that's what you need to read up on.

We are here for you sweetie.  Through every step of the process.  You HAVE your support group right here.  I do not recommend physical support groups, where you meet at someone's home.  I found that they were depressing and offered little support.  I got discouraged when two of the members were in wheelchairs, as that really is a very rare aspect of MS.  All that was discussed at the meetings was aches and pains.  I found nothig positive about the meetings, so I stopped going.  My mood even improved. When you are just starting out with your diagnosis, that can be a bit overwhelming to hear.  I wouldn't put yourself through that.  But again, that is your decision.  Totally.

Lean on us and lean on us often.  Relax and let all of this sink in....

Big HUGS,
Heather

[LATW]

I am sorry...it was just last Wednesday I got my dx.  It has been a whirl wind every since.  The doctor decided what she wants me on.  I have had phone calls from health care workers of one sort or another every day.  
My Avonex arrived today. The nurse will be here tomorrow. Although I am not going to take the Avonex until Friday evening. I need to make sure I have someone here with me and the kids before I take my first dose.
I am going through what you are.  I was relieved at first but then reality set in.  I feel like if I can just get through getting my treatment set up.....I will be fine.  
I was given some meds for TN and it is working. That makes me very happy!  I guess the rest of life will be a wait and see ride.  Not much different that the ride I just came off of. The only difference is I now know what IT is. My PCP told me I had an "IT" this summer. The only thing is he did not know what "IT" was.  Now we know.....
I have found so much support on this board and a good MS friend on another.  I guess this is a new road.  We stepped through a door we can not go back through.  A new adventure I suppose.  

Lee Ann

dx'd MS 2-13-2008

[kitten o]

I'M SO SORRY FOR YOUR DX.
I HAVE TEARS FOR YOU RITE NOW.
I WAS DX IN MAY 2007, I AM NOT ON ANY SHOTS.
I TRYED COPAXONE AND HAD A SIDE EFFECT,
SO I STOPPED. I WAS ON IT FOR 3 MONTHS.
I AM OFF SHOTS NOW FOR 5 MONTHS, I AM DOING,
THANK GOD WELL, I HAVE GOOD DAYS AND BAD ONES.
LIKE EVERYONE. DO YOUR RESEARCH, YOU WILL
MAKE THE RITE DICISION. WE ARE ALL HERE.
I LOVE THIS PLACE.
GOD BLESS
KITT

[gollie]

Hi thank you so much for you replies just got rid of the head ache and came in to check post.  Thank you for all the support.
Some of you are right on about the emotional and greving process, i was pre pared for it
tho after reading and learning so much about ms Dx's before hand, especially after being in limbo land for so long.  i expected It,  but to actually experience it is a whole other experience. Iv been keeping my head together pretty good since the nero appt this morning, but in the same instance i can feel the stress in my stomach, and still getting the feeling of disbelief,  im assumming ill go threw alot more emotions in the next few days, ( I did till my son and his wife today and even tho they were expecting it as well its still a horrible feeling to have to tell your kids this no matter how old they are. I have yet to tell my younger son and wife) grrr. but am determined to tame the MonSter as momotreme would say. then get on with my life move forward and learn how to live and cope with MS and meds and anything else that may go with it. along with all of your help and support here) I am sooooo hoping that with the right meds, that i may see some relief from pain symtoms ect, and maybe be able to have more good days than bad days as opposed to what i have been used to for so long now.  

Essdipity You mention that copaxone is different than the others , can you tell me abit more on that.

Oh I do have med insurance, my co pay it abit high but not that bad, 40.00 per month co   or i could mail order 3 months worth for 80.00  but question on that tho, are these medicins somthing that can be mail order , and  is it common to order a 3 month supply
or will it spoil.

I havnt called my med insurance company yet but I do not see rebif listed in my covered drug list booklet, only
Copaxone
avonex
betaseron                even so if any one is using the above still like to hear more on how others are doing with them.
after i get educated on above four meds i will call insurance company to find out if they cover the rebif.
Thank you LLWB Essdipity Double vision1 Monotreme Rena705 and last but not least Heather!    

[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

[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

[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

[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

[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

[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]

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  

[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

[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.

[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]

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.

[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

[gollie]

HI there! thank you all for the informative information in the med injections this helps me alot. Seems that even tho i have been researching the meds on the net, I could only get the general info on them. You have all  helped alot.
Iv been staying pretty strong but have to admitt im kind of in a fog and forgetting all kinds of stuff today, Im going to chalk that up to the Dx stress from yesterday lol. I really believe tho that one of the reasons i am doing as well with this as i am is the fact that the members of this community have been so informative open honest and supportive.
You all made it so much eaiser educating me on MS before I even had the Dx that was a big thing for me and made it much easier to hear the DX.  Sure im still in abit of fog but
with out all of the help in here I probabley would have been a basket case hearing that Dx and not having any education or info on it.   IM going to be pondering the med stuff
for a few more days    before making a decision, im sure ill find a few more questions to ask before i choose            Thank You All   So Much    Gollie

[Momzilla]

Hi!

I don't know where my post to you went earlier... I wrote to you from work, but now I don't see it.  Of into the vast cyberness....

I want to let you know how sorry I am about your diagnosis, as everyone is, of course.  What a shock!  It will take time for you to get used to, I'm sure.  And, as Elaine has said, I'm sure you are happy to be well rid of Limbo, the not knowing, wondering what is wrong and now being able to fight it.  Hooray!

Take your time with this new "punch in the stomach."  We're all here for you.  Good luck in deciding what your course of action will be.  What your drug of choice will be.  I'm sure you'll choose something that will be a good fit for you.  Try out what you think is right.  I'm sure it's not written in stone and you can always try something else down the road if it's not right.

Happy and sad for you.

Zilla*