Aa
Gollie Dx's With RRMS today
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
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
Hi Quix Thank You so much for you kind words and support. its so good to know i have a place to learn, and have support and just communicate with others that are going threw the same things. (long post giving back round for limbolanders)
Now yes in answer to your question, I have 2 sons both married to wonderful girls, and the best gift my mom ever gave me, my brother he is a year younger than me 47 and always there for me. they all have been expecting the ms dx even more so than i was. they have seen what i have been threw so they were not shocked and are very supportive. Thank God i am blessed in that department.
Yes i am feeling all the roller coaster emotions you describe. Its crazy but relieving as well. And I believe im taking it pretty well thanks to you and all the members of this community, im not sure where id be right now if i hadnt found you all before my dx.
Now as for the fibromyalshia yes i was dx's at 33 years old and for 15 years every time had somthing wrong it was passed off as fibro by the docs. even when my neck and lower back got so bad the doc sent me back to work that day with pain meds
i couldnt even move my arm and hands they hurt so bad 2002 i went to work and went right to medical and the doc there sent me straight back home say this is not!!!! fibo go back to the doc in mrning and tell them i said so lol. well my doc wasnt there i saw np and she sent me to mri upper and lower only to find i had c5-c6 herniation blatsting into my spinal cord, and L5-S1 completely deteriorate and gone.which led to 2 fusions 2002 and 2003. needless to say i fired my pcp ( i found out that the day before when i was there begging for help and telling her this is NOT fibro that she was in a hurry to leave for her precious vacation that afternoon).
Way back when i was dxs witht about a year into it, which i just remember it all recently.i went to doc with balance issues vertigo muscles hurting ect, he did mri, said there was an itsy bitsy tiny tiney spot, remember now that was 14 years ago. old mri machines.
went to the nero and he said your fine nothing to worrie about its the fibro. I somwhat recall the look on my pcps face as well as his comment, I still think it could be ms. that was that, i forgot all about it till recently. threw the rest of the years up till 2006.
2006 I started to get episods my eyes would go blurry then my lip would start to tingle then my toung would go numb this would last only 30 or 40 sec. then would come back threw out the day for about 3 to 6 days in a row then stop. then would come back a month or so later after the first few episodes i started to get a weakness sensasion in my thighs along with it. Another nero go figure 15 years of this grrr.
as usual looked at file and saw fibro dx, first thing he said, i would like you to see psycologist. that was it for me.i promtly left the office and blew him off. I was getting ready for my move from ny to florida (kids moved here before) june 2007
and encountered a different kind of episode now i had throbbing pulsing pain on right side of head near ear, but deeper inside head
it would last just a few seconds and stop then come back threwout the day for about 3 days. i noticed i had low grade fever.
it went away tho.
Got to florida july 2007 still having all kinds of symtoms fitigue ect.. low grade fevers. new doc checked everything all was ok. untill sept 2007 The episode with the throbbing pain had reared it ugly head again same as in june a2006 except this time it was worse and i had a sore or tender spot on the right side back of head right at base of skull and low grade fever again on the third day when the trobbing pain stared it was so painful my vision went black for a few seconds. Doc sent me to emergency thinking i had spinal menijitis. they did a spinal tap for it and it was clear. the release nurse came in and relayed info fro emercency doc, said gonna give you antibiotic for possible sinus infection , and in the same breath hands me a script for MRI of brain, mri of cervical, and an MRA of brain. Crazy right? well no because my pcp got the results mri showed the brain spots, he was wonderful and that is where my story began with ms. there is alot of stuff left out inbetween above but im already going to have to break this post into 2 parts i think.
I know its long but i wanted to get up on post for limbo landers even if it can help just one person to learn to pay attention to what their bodys tells them and act on their gut instinct, dont let docs push you around like they did to me, there is so much accesss to info on stuff these days, (there wasnt alot out there 15 years ago when all this started) Insist on answers and dont give up!!
OH and Quix that is the reason the nero did not make me get an lp he was very mad when i told him the er doc only did a menijitis check on it. and nothing more, he just could not comprehend why she would go to all the trouble to or all mri s and mra and not think to do an ms check on the LP as well Now after he spent some time looking at the cd mri with the brain spots he said that if he could find out what he needed to know from the evp testings then he would not require me to go threw another lp i got lucky on that count. Any way i wouldnt normallly go on about all this history, I just did it in case it could help someone else.
All My Best Golle
Now yes in answer to your question, I have 2 sons both married to wonderful girls, and the best gift my mom ever gave me, my brother he is a year younger than me 47 and always there for me. they all have been expecting the ms dx even more so than i was. they have seen what i have been threw so they were not shocked and are very supportive. Thank God i am blessed in that department.
Yes i am feeling all the roller coaster emotions you describe. Its crazy but relieving as well. And I believe im taking it pretty well thanks to you and all the members of this community, im not sure where id be right now if i hadnt found you all before my dx.
Now as for the fibromyalshia yes i was dx's at 33 years old and for 15 years every time had somthing wrong it was passed off as fibro by the docs. even when my neck and lower back got so bad the doc sent me back to work that day with pain meds
i couldnt even move my arm and hands they hurt so bad 2002 i went to work and went right to medical and the doc there sent me straight back home say this is not!!!! fibo go back to the doc in mrning and tell them i said so lol. well my doc wasnt there i saw np and she sent me to mri upper and lower only to find i had c5-c6 herniation blatsting into my spinal cord, and L5-S1 completely deteriorate and gone.which led to 2 fusions 2002 and 2003. needless to say i fired my pcp ( i found out that the day before when i was there begging for help and telling her this is NOT fibro that she was in a hurry to leave for her precious vacation that afternoon).
Way back when i was dxs witht about a year into it, which i just remember it all recently.i went to doc with balance issues vertigo muscles hurting ect, he did mri, said there was an itsy bitsy tiny tiney spot, remember now that was 14 years ago. old mri machines.
went to the nero and he said your fine nothing to worrie about its the fibro. I somwhat recall the look on my pcps face as well as his comment, I still think it could be ms. that was that, i forgot all about it till recently. threw the rest of the years up till 2006.
2006 I started to get episods my eyes would go blurry then my lip would start to tingle then my toung would go numb this would last only 30 or 40 sec. then would come back threw out the day for about 3 to 6 days in a row then stop. then would come back a month or so later after the first few episodes i started to get a weakness sensasion in my thighs along with it. Another nero go figure 15 years of this grrr.
as usual looked at file and saw fibro dx, first thing he said, i would like you to see psycologist. that was it for me.i promtly left the office and blew him off. I was getting ready for my move from ny to florida (kids moved here before) june 2007
and encountered a different kind of episode now i had throbbing pulsing pain on right side of head near ear, but deeper inside head
it would last just a few seconds and stop then come back threwout the day for about 3 days. i noticed i had low grade fever.
it went away tho.
Got to florida july 2007 still having all kinds of symtoms fitigue ect.. low grade fevers. new doc checked everything all was ok. untill sept 2007 The episode with the throbbing pain had reared it ugly head again same as in june a2006 except this time it was worse and i had a sore or tender spot on the right side back of head right at base of skull and low grade fever again on the third day when the trobbing pain stared it was so painful my vision went black for a few seconds. Doc sent me to emergency thinking i had spinal menijitis. they did a spinal tap for it and it was clear. the release nurse came in and relayed info fro emercency doc, said gonna give you antibiotic for possible sinus infection , and in the same breath hands me a script for MRI of brain, mri of cervical, and an MRA of brain. Crazy right? well no because my pcp got the results mri showed the brain spots, he was wonderful and that is where my story began with ms. there is alot of stuff left out inbetween above but im already going to have to break this post into 2 parts i think.
I know its long but i wanted to get up on post for limbo landers even if it can help just one person to learn to pay attention to what their bodys tells them and act on their gut instinct, dont let docs push you around like they did to me, there is so much accesss to info on stuff these days, (there wasnt alot out there 15 years ago when all this started) Insist on answers and dont give up!!
OH and Quix that is the reason the nero did not make me get an lp he was very mad when i told him the er doc only did a menijitis check on it. and nothing more, he just could not comprehend why she would go to all the trouble to or all mri s and mra and not think to do an ms check on the LP as well Now after he spent some time looking at the cd mri with the brain spots he said that if he could find out what he needed to know from the evp testings then he would not require me to go threw another lp i got lucky on that count. Any way i wouldnt normallly go on about all this history, I just did it in case it could help someone else.
All My Best Golle
I wanted the whole forum to have a chance to say their peice. I am always happy when someone comes on a says they got their diagnosis, and yours is no different. I know you were badly treated by one neuro, and it seems #2 worked that way he should. Part of it is that I would never wish the nevernever land of limbo on anyone. And 15 years there is a true h*** indeed. I hope that much of that time you really did have (Fibro, was it?) A diagnosis means you either are out of limbo, or you won't have to go through it. For most people it (the Dx) comes after you already know something is very wrong. So nothing has changed except you know who the enemy is.
Well, you're already a treasured part of this family. You fit in instantly and I noticed. So now, you have gads of leaning to do. We'll try to get it right, but if we don't, we'll just tell a cute joke and get out of trouble that way.
Has it started to sink in? Still a little elated at not being put off. Starting to be a little angry or down-right pi$$ed off? How is family taking it? I don't remember if you ever told us that family was doubtful that anything was really wrong. This will also be a blow for them. My dad was pretty clear about his disappointment in my becoming lazy. He is still acting weird about the diagnosis, a bit too pitying mostly.
A few people have stated that it feels weird, like Limbo Land had become an identity of it's own - the belief that no one would ever solve the puzzle. Then when it gets solved you don't know what to do.
Whoopeeee about the LP. More and more, when you see a really good neuro who can put the whole picture together, people are getting the Dx without a tap. That tells me your neuro is confident and knowledgeable. That's great!
Welcome again to our little family! Another level in the Order of Hypo Gamma Chondria. We'll be glad to roast your old wienie neuro on Friday night. Remember there is nothing too weird, trivial, or embarassing to ask here. You can certainly try a support group, it's a good way to meet people to see socially, but I think you've been around here long enough to know you can't leave. We'll track you down and place you in one of my ill-fitting knit body stockings so you stick to the Vecro wall. So, you a truly stuck with us and we, delightedly with you!!
Quix
Well, you're already a treasured part of this family. You fit in instantly and I noticed. So now, you have gads of leaning to do. We'll try to get it right, but if we don't, we'll just tell a cute joke and get out of trouble that way.
Has it started to sink in? Still a little elated at not being put off. Starting to be a little angry or down-right pi$$ed off? How is family taking it? I don't remember if you ever told us that family was doubtful that anything was really wrong. This will also be a blow for them. My dad was pretty clear about his disappointment in my becoming lazy. He is still acting weird about the diagnosis, a bit too pitying mostly.
A few people have stated that it feels weird, like Limbo Land had become an identity of it's own - the belief that no one would ever solve the puzzle. Then when it gets solved you don't know what to do.
Whoopeeee about the LP. More and more, when you see a really good neuro who can put the whole picture together, people are getting the Dx without a tap. That tells me your neuro is confident and knowledgeable. That's great!
Welcome again to our little family! Another level in the Order of Hypo Gamma Chondria. We'll be glad to roast your old wienie neuro on Friday night. Remember there is nothing too weird, trivial, or embarassing to ask here. You can certainly try a support group, it's a good way to meet people to see socially, but I think you've been around here long enough to know you can't leave. We'll track you down and place you in one of my ill-fitting knit body stockings so you stick to the Vecro wall. So, you a truly stuck with us and we, delightedly with you!!
Quix
We are here for you, every step of the way.
Hang tight. Have a good evening. Tomorrow's another day.
Love,
Zilla*
Hang tight. Have a good evening. Tomorrow's another day.
Love,
Zilla*
Hi Momzilla Thank You so much for your support and words of encouragement!
Your so right, its great to be out of limboland after 15 years. at least now i have somthing tangible (if i may call it that) to fight and guard against. On my way one step at a time. its does seem abit confusing and strage and shocking at the same time tho after being in limbo land for that long and feeling stagnet not being anything i could do about it.. now (just overnight) to be able to start taking action in the right direction. can be quite and adjustment.. With all the help from all of you here i am sure i can make it threw. Gollie
Your so right, its great to be out of limboland after 15 years. at least now i have somthing tangible (if i may call it that) to fight and guard against. On my way one step at a time. its does seem abit confusing and strage and shocking at the same time tho after being in limbo land for that long and feeling stagnet not being anything i could do about it.. now (just overnight) to be able to start taking action in the right direction. can be quite and adjustment.. With all the help from all of you here i am sure i can make it threw. Gollie
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*
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*
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
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
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
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.
The irishman in me makes me want to drink a bit; the scottsman in me just does not want to pay for it.
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
I guess when your name starts with Mc, we might be more prone to weird things...whatcha think fella? Maybe? LOL
Heather
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.
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.
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
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
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
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
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
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
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, 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
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
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
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
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
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
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
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
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
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!
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!
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
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
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
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
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
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
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
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
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
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
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