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About to take my first MS injection
Hi yall! I'm quite new to this ms thing going on. I was diagnosed with probable ms and am starting meds. I so far am just taking 100mg of nuerotin 9 times a day. I'm waiting to see if my insurance goes through so I can start Avonex. Okay this is my question...I am only 23 yrs old and live with my bf of 3 yrs. I asked him politely if he could leave for like 2 weeks so I can deal with this on my own. I just feel like i need to do this on my own..cause when i put that first shot into me is when I know in my heart I am going to have to accept this disease and accept the fact i'm might need help from others in the future wich i have a hard time with this cause i was raised to never be weak and take care of your own.. Do you think I'm in the right to ask him to leave for a lil bit? He got really mad at me and said he'll leave me for good if he has to but deep down inside I know I have to do this on my own. So am I wrong to feel this way or are these feelings even normal? ( i even told my family to leave me alone for a lil while when i take my first shot and they accepted that with no arguement because they no how i am and i thought he would too) Also can anyone describe the side effects and how long they can last and if they are painful? I mean the neurotins knocked me on my butt so i cant even imagaine what avenox will do
hi glad u found our new home here on MS community they have helped me out alot even though i was dxd at 16 i thought i had the world in my hands and could do every thing i wanted workrd to till 06 when i had a realy bad relaps and finly went to dr he said Copaxone for you young lady
i said no way im going to TX for 3 months got 6 malls to get stores up and running befor Christmas and cant take shots now cant be sick boy someone should have slaped me smart cause that 3 months down there was my first mastake next was shuting everyone out when they wanted to help me even my bf cause now that im realy needing help on a day to day bases i have no one here sure i still have my bf but he dosent help me on my bad days and where i was so use to doing every thing for the girls they are in shock mode right now when it come to house work and helping me to the pot to pee and all around help so please please let every one in ( in ur own time )
but do let them in and let them help in any way they want right now cause u might realy need them and they wont know what or how to help later and as far as meds go im on Copaxone no flu semptems here just nice lumps and little pain after shot if ur shot meds dont work talk to ur dr about Copaxone its not bad just glad i dont have to see the needle every day lol i realy do hate needles and if u need to talk to someone about what ur going through ur on the right place here we vent cry yell ask why us joke laugh and give all the ciber huggs and comfert that we can to one another just keep comeing here for suport
and remeber keep smileing it makes people wander what ur up to other than ur hight on god days or kissing the floor on bad days whitch my 4 year old asked me yesterday why i was laying on the floor i thought fast and said ooooooooooo im just smelling the carpite to see if it needs vaccuming she said but mommy u just did that this morning i said i know but i might have missed a spot she laughed and said mommy u couldnt have umy perfict mommy i love u made me feel alot better about falling down lol kids seem to say the right things when we realy need it
sorry this so long in the welcomeing just wanted u to know ur not alone in the stubern department and thats a good thing but still leave the door cracked so every one can ease back in to help when ur ready to ok thats realy important well i hoped this helped u at least a little im not much good on giveing addvice when im still lurning to listen and take it myself lol .bye for now with lots of streangth and suport go out to u from all of us MS ers
i said no way im going to TX for 3 months got 6 malls to get stores up and running befor Christmas and cant take shots now cant be sick boy someone should have slaped me smart cause that 3 months down there was my first mastake next was shuting everyone out when they wanted to help me even my bf cause now that im realy needing help on a day to day bases i have no one here sure i still have my bf but he dosent help me on my bad days and where i was so use to doing every thing for the girls they are in shock mode right now when it come to house work and helping me to the pot to pee and all around help so please please let every one in ( in ur own time )
but do let them in and let them help in any way they want right now cause u might realy need them and they wont know what or how to help later and as far as meds go im on Copaxone no flu semptems here just nice lumps and little pain after shot if ur shot meds dont work talk to ur dr about Copaxone its not bad just glad i dont have to see the needle every day lol i realy do hate needles and if u need to talk to someone about what ur going through ur on the right place here we vent cry yell ask why us joke laugh and give all the ciber huggs and comfert that we can to one another just keep comeing here for suport
and remeber keep smileing it makes people wander what ur up to other than ur hight on god days or kissing the floor on bad days whitch my 4 year old asked me yesterday why i was laying on the floor i thought fast and said ooooooooooo im just smelling the carpite to see if it needs vaccuming she said but mommy u just did that this morning i said i know but i might have missed a spot she laughed and said mommy u couldnt have umy perfict mommy i love u made me feel alot better about falling down lol kids seem to say the right things when we realy need it
sorry this so long in the welcomeing just wanted u to know ur not alone in the stubern department and thats a good thing but still leave the door cracked so every one can ease back in to help when ur ready to ok thats realy important well i hoped this helped u at least a little im not much good on giveing addvice when im still lurning to listen and take it myself lol .bye for now with lots of streangth and suport go out to u from all of us MS ers
Hi sllowe and b125 you both nailed it right on the head on how I'm feeling....I am new to this and like you said sllowe I have the sam exact things running through my mind and am just not ready to talk indepth to anyone until I have my facts staright and know what I'm going to say and how I'm going to asnwer any questions people may have. Also your right about the meds they hard to distinguish the two apart. I get very tired and lose my memory alot like recent memory and I have no idea if that Ms or Neurotins..my mom even noticed she tells me things when she visits then a half an hour later i have no clue and she gets very frustrated but I dont think she'll ever understand that one Probaly to her im just a typicaly 20 some yr old ignoring her mom!lol but that is not it at all i really dont remember the pain has subsided quite a bit but the stiffness in my knee is very painful and tight still..Best thing I learned lately is to laugh about it especially my memory problems I try to just make it into a joke! instead of letting it get to me
to b125 thats excalty how I want to do it also just by myself and let myself get used to the changes and understand what is going on. I highly appreciate you writing that makes me feel alot better .....like yours my bf was also pretty supportive when i first found out not during my attack honeslty i think he thought i was faking it even though i was falling down and running into walls it was only when i almost fell down a flight a stairs onto concrete is when it finally snapped in my family and bf i need help....But when i found out what it was he was supportive but it seems its annoying him now i dont complain about the pain or the memory or the fatigue at all maybe like one percent ill say something but i;ve changed and this changed his life also life is in a different perspective to me and honeslty i belive a better one it made me a better person i just dont know if hes going to accpet me for the new me .
And thank you all for talking about the meds! I thought i was going to be like deadly sick or something! lol but it dont sound to be to bad ...i still dont know tho im still going with doing this on my own like ive been and just learning more and understanding more of what is going on until i let people in closer in to my true feelings and emotions.
to b125 thats excalty how I want to do it also just by myself and let myself get used to the changes and understand what is going on. I highly appreciate you writing that makes me feel alot better .....like yours my bf was also pretty supportive when i first found out not during my attack honeslty i think he thought i was faking it even though i was falling down and running into walls it was only when i almost fell down a flight a stairs onto concrete is when it finally snapped in my family and bf i need help....But when i found out what it was he was supportive but it seems its annoying him now i dont complain about the pain or the memory or the fatigue at all maybe like one percent ill say something but i;ve changed and this changed his life also life is in a different perspective to me and honeslty i belive a better one it made me a better person i just dont know if hes going to accpet me for the new me .
And thank you all for talking about the meds! I thought i was going to be like deadly sick or something! lol but it dont sound to be to bad ...i still dont know tho im still going with doing this on my own like ive been and just learning more and understanding more of what is going on until i let people in closer in to my true feelings and emotions.
Hey, Erin, welcome. I was just diagnosed at the end of this May, and had my meds ordered by a very proactive doc in June. I am presently taking Rebif, but can relate to everything to are going through.
After I was dx'd, I very slowly told the *closest* and only the closest, of my friends about it. Many weren't exactly sure what to say, and I understand that, it's hard without first-hand experience - but of the few I did tell, all were supportive. I was exactly like you in that I wanted to "do it myself" in relation to learning the injections. I didn't discuss with my family when the med training was going to be, and I didn't want anyone there other than the woman who came to train me. I didn't even discuss that much afterward, because I needed time to mull everything over in my head and really get accustomed to the fact it was a part of my life.
My experience with my boyfriend/fiance' has been mixed. The first couple weeks he was incredibly supportive and wanted just to be sure I followed medical orders and got enough rest, etc. After my primary, largest symptom resolved, it got to be a bit harder though. MS brings many smaller, "annoying" symptoms that are very hard to explain to others. When we "look fine" on the outside, sometimes it's difficult for the others around us to understand why we act differently than they may have been used to.
Don't shut your boyfriend out - if he has been with you three years, he seems committed. If he truly is, he will weather this with you and learn to be understanding (at the same time, realize it might be hard sometimes for him). If he eventually decides otherwise, he wasn't the right guy for you.
About the injections.... most of the meds now have "autoinjectors" to help you administer the injection. If this is available with Avonex, it might be really helpful while you're getting the right technique down. I was told by a nurse specialist to try taking IBProufen a few hours before the injection and Tylenol Extended Release after the injection. It can help if you have flu like symptoms, but keep in mind that interferons are hard on your liver, and so is Tylenol. Because the Extended Release is two capsules at 650mg each per dose, I quickly reduced it to only one, and am now working on none. I have found that a little bit of heat before the injection, followed by some cold after, is good for me, but that depends on the individual.
I hope that your insurance will cover the meds for you. Some have a high copay when they do, and if that is the case, go to the Avonex website at https://www.avonex.com/msavProject/avonex.portal/_baseurl/threeColLayout/SCSRepository/en_US/avonex/home/avonex-services/reimbursement.xml
The major drug companies often help patients out to try to make therapy a little bit more affordable.
After I was dx'd, I very slowly told the *closest* and only the closest, of my friends about it. Many weren't exactly sure what to say, and I understand that, it's hard without first-hand experience - but of the few I did tell, all were supportive. I was exactly like you in that I wanted to "do it myself" in relation to learning the injections. I didn't discuss with my family when the med training was going to be, and I didn't want anyone there other than the woman who came to train me. I didn't even discuss that much afterward, because I needed time to mull everything over in my head and really get accustomed to the fact it was a part of my life.
My experience with my boyfriend/fiance' has been mixed. The first couple weeks he was incredibly supportive and wanted just to be sure I followed medical orders and got enough rest, etc. After my primary, largest symptom resolved, it got to be a bit harder though. MS brings many smaller, "annoying" symptoms that are very hard to explain to others. When we "look fine" on the outside, sometimes it's difficult for the others around us to understand why we act differently than they may have been used to.
Don't shut your boyfriend out - if he has been with you three years, he seems committed. If he truly is, he will weather this with you and learn to be understanding (at the same time, realize it might be hard sometimes for him). If he eventually decides otherwise, he wasn't the right guy for you.
About the injections.... most of the meds now have "autoinjectors" to help you administer the injection. If this is available with Avonex, it might be really helpful while you're getting the right technique down. I was told by a nurse specialist to try taking IBProufen a few hours before the injection and Tylenol Extended Release after the injection. It can help if you have flu like symptoms, but keep in mind that interferons are hard on your liver, and so is Tylenol. Because the Extended Release is two capsules at 650mg each per dose, I quickly reduced it to only one, and am now working on none. I have found that a little bit of heat before the injection, followed by some cold after, is good for me, but that depends on the individual.
I hope that your insurance will cover the meds for you. Some have a high copay when they do, and if that is the case, go to the Avonex website at https://www.avonex.com/msavProject/avonex.portal/_baseurl/threeColLayout/SCSRepository/en_US/avonex/home/avonex-services/reimbursement.xml
The major drug companies often help patients out to try to make therapy a little bit more affordable.
Hi there,
Adding on a belated welcome. Needing time to yourself is totally understandable. Especially if that's your natural way of dealing with something totally new.
Downside of being dx'd fast is that there is still so much to learn. Your head can spin with fact, opinion, decision, advice, etc.
My thoughts are to take the time you need, but I'm also thinking if you exclude bf during the shot and the week or so after you may find the moment uneventful post injection and wish he were there with you :)
Are you still recovering from an attack? How are your MS symptoms? Because I started meds soon after my 1st attack, I found it difficult to distinguish some med side affects and MS symptoms. Just wondering were you are ...
Thanks for joining us!
-Shell
Adding on a belated welcome. Needing time to yourself is totally understandable. Especially if that's your natural way of dealing with something totally new.
Downside of being dx'd fast is that there is still so much to learn. Your head can spin with fact, opinion, decision, advice, etc.
My thoughts are to take the time you need, but I'm also thinking if you exclude bf during the shot and the week or so after you may find the moment uneventful post injection and wish he were there with you :)
Are you still recovering from an attack? How are your MS symptoms? Because I started meds soon after my 1st attack, I found it difficult to distinguish some med side affects and MS symptoms. Just wondering were you are ...
Thanks for joining us!
-Shell
Thanx ren as myself i'm a definate newbie i only new for about 2 weeks now so i guess im just still dealing with all the emotions and need a minute to figure everything out. I guess all I need is time cause my mind is going 100 miles per hour. I did'nt even have to wait 3 months after my first attack my physician was on the ball! lol he figured it out fast! Thanks though for your advice and since your new and myself as well write to me whenever! It be nice to get to know someone goiing through the same stages at the same time you know?!
Hi, I'm a little late to the party but as a "newbie" who was just diagnosed in April, I can certainly relate. You are having a very justifiable pity party and you have earned it . But , as Heather and the others have pointed out you NEED everyone's help to adjust to this dramatic change in your life.
My advice, from having to recently deal with these issues which include my kids, is to slowly let everyone back in so that they can offer you strength in this time of need and in the change in the life you had planned for yourself.
Your boyfriend probably has a right to be mad. Up to now you probably have shared everything and now is when you need support the most. So, my 2 cents worth is have yourself a small pity party ( which is well deserved!!!!) and then sllowly let others help you through this life altering diagnosis.
Best wishes to you in this new journey. We are here, without judgment for you anytime, just ask.
Warmly,
Ren
My advice, from having to recently deal with these issues which include my kids, is to slowly let everyone back in so that they can offer you strength in this time of need and in the change in the life you had planned for yourself.
Your boyfriend probably has a right to be mad. Up to now you probably have shared everything and now is when you need support the most. So, my 2 cents worth is have yourself a small pity party ( which is well deserved!!!!) and then sllowly let others help you through this life altering diagnosis.
Best wishes to you in this new journey. We are here, without judgment for you anytime, just ask.
Warmly,
Ren
EZ, think teamwork, teamwork, teamwork. All of us at one time or another think we can go it alone. The super id gets in the way. Right now would be a time to pull together and not go it alone. Your relationship might find strength and such you didn't know existed.
just my .02 worth. welcome aboard and good luck.
just my .02 worth. welcome aboard and good luck.
In all honesty when I am feeling bad (which wakes up my demons) I like to be left alone but and that is a huge but I love being able to yap with my wife about how I am feeling and some of the irritations (more like frustration, rage, and bitterness) going through my head. I guess it's a trial by error thing, at least for me. Most of the time I blow it off (seriously, I have felt like crud for over two decades) and tell myself I have been dealing with this for some time. BTW, good luck on your shot. Make sure you take a tylenol:). Lulu makes a grand point, alot of folks do live with it and have very normal lives. It just takes time and understanding. Mainly understanding by yourself and realizing that your life is going to change but you can make it as easy as possible..enuff of my rambling..best to you...
EZ, That nurse is there to help you figure out the emotional needs as well as your phycial needs so please talk with her. Alos, you say this shouldn't be a big deal - you are so wrong. This is a huge deal - something you will live with for a very long time.
Being sick and in pain isn't the usual problem with most MS patients - most live a almost normal life.... keep that in mind too!
We're here for you - I hope we'll see you around lots.
bigs hug to you!
Lulu
Being sick and in pain isn't the usual problem with most MS patients - most live a almost normal life.... keep that in mind too!
We're here for you - I hope we'll see you around lots.
bigs hug to you!
Lulu
Thank you so much for your insight. I will start working on slowly opening up about everything i just hate seeing my family sad and i figured if they saw me sick or in pain it would just hurt them more and that they dont need to put through that you know? I now know that i should def. work on that. I just always had a exremely hard time letting people in and to know what i really feel. I know i do not want to be alone or left through this but inside it scares me that they or he might see me as a burden or he might see what he'll have to go through in the future and not want to tolerate it. Or even see me as weak and not strong no more. I dont know im just so honeslty confused inside. Even reading your answers makes me eyes tear up knowing i finally told people a situation that aint even that big but to me it is and to people that actaully do understand, It's such a relief to find people like me! I have an appoinment with the ms nurse to talk about the drug and everything else involving around ms and i'm just hoping i dont breakdown cause i been holding everything. Ok I just wanted to say Thank you to both of you! and i really do take your advice to heart!
Hi and welcome to the forum. Your initials work out to be EZ but it sounds to me like you want to make this HARD.
I do understand you feeling like you need to be left alone - I did the same thing. I told my family and then asked them to let me be to have my own pity party for about 24 hours. I really didn't want to listen to them when I needed to be listening to my own voices at the time.
After the first day or so, I slowly reached out to my family person by person as I felt I was emtionally stable to do. They care very much for me and it would have been unfair to them if I made them sit on the sidelines and not allow them to discuss this with me.
Like Heather, it makes me sad to think that your boyfriend is not permitted to share this with you. If you have been together for 3 years that is long enough for you and him to know what your relationship is built upon. If its just good times and doesn't include any tough stuff then I can see why you wouldn't want him around.
If he had been dx'd with MS - how would you feel if he asked you to leave so he could work through it on his own? I imagine you would be hurt, you would be angry, and you would be disillusioned. I know you need to put yourself first, but that includes building and maintaining your relationships. Believe me, we can't do this alone.
Erin, I hope we will see you around here often - we're here to travel this path with you.
my best,
Lulu
I do understand you feeling like you need to be left alone - I did the same thing. I told my family and then asked them to let me be to have my own pity party for about 24 hours. I really didn't want to listen to them when I needed to be listening to my own voices at the time.
After the first day or so, I slowly reached out to my family person by person as I felt I was emtionally stable to do. They care very much for me and it would have been unfair to them if I made them sit on the sidelines and not allow them to discuss this with me.
Like Heather, it makes me sad to think that your boyfriend is not permitted to share this with you. If you have been together for 3 years that is long enough for you and him to know what your relationship is built upon. If its just good times and doesn't include any tough stuff then I can see why you wouldn't want him around.
If he had been dx'd with MS - how would you feel if he asked you to leave so he could work through it on his own? I imagine you would be hurt, you would be angry, and you would be disillusioned. I know you need to put yourself first, but that includes building and maintaining your relationships. Believe me, we can't do this alone.
Erin, I hope we will see you around here often - we're here to travel this path with you.
my best,
Lulu
Hi Erin and Welcome to the MS Forum.
Sweetheart, this is my personal opinion, but I think you were wrong to ask your boyfriend to leave. If you have been with him for three years, he is in this "fight" with you. He is your ally in this disease and you will need his support many times over the years to come. Shutting him out now, may not be a good idea. I hope that you re-consider his feelings as well as your own. I can't imagine my boyfriend asking me to leave, while he handles his health issues alone. Frankly, if he did ask me that, I probably would not come back. And who could blame him.
You should go to the Avonex website to get all the information about the drug before you start to use it. It has common side-effects, like flu-like symptoms. Many people take their shot at night to hopefully sleep through the side affect. Everyone that I know that is on Avonex, as well as when I took it for three years; pre-medicates with an over the counter pain reliever the day of their shot and for about 24-36 hours after the shot.
For some the flu like side effects diminish as treatment continues. For some the flu like symptoms remain but are tolerable. I am sure that you have been told by your doctor and the Avonex people at Biogen, that you should have your liver enzymes checked every 3 to 6 months while taking this drug. If you have a propensity to depression, you should work closely with your doctor while using this drug.
Please Erin, do not shut your boyfriend or your family out. This is the time that you need the support of family. This is no time to be alone. You deal with having MS on your own, then anything you cannot handle, you talk with people that do have MS and lean on your family and boyfriend. MS doesn't just happen to us, it happens to the entire family.
I am sure that other members will be along shortly to join in on the discussion. We are glad that you are here. We know exactly what you are feeling right now. Lean on us, family and friends. You'll need the support.
All Best Wishes,
Heather
Sweetheart, this is my personal opinion, but I think you were wrong to ask your boyfriend to leave. If you have been with him for three years, he is in this "fight" with you. He is your ally in this disease and you will need his support many times over the years to come. Shutting him out now, may not be a good idea. I hope that you re-consider his feelings as well as your own. I can't imagine my boyfriend asking me to leave, while he handles his health issues alone. Frankly, if he did ask me that, I probably would not come back. And who could blame him.
You should go to the Avonex website to get all the information about the drug before you start to use it. It has common side-effects, like flu-like symptoms. Many people take their shot at night to hopefully sleep through the side affect. Everyone that I know that is on Avonex, as well as when I took it for three years; pre-medicates with an over the counter pain reliever the day of their shot and for about 24-36 hours after the shot.
For some the flu like side effects diminish as treatment continues. For some the flu like symptoms remain but are tolerable. I am sure that you have been told by your doctor and the Avonex people at Biogen, that you should have your liver enzymes checked every 3 to 6 months while taking this drug. If you have a propensity to depression, you should work closely with your doctor while using this drug.
Please Erin, do not shut your boyfriend or your family out. This is the time that you need the support of family. This is no time to be alone. You deal with having MS on your own, then anything you cannot handle, you talk with people that do have MS and lean on your family and boyfriend. MS doesn't just happen to us, it happens to the entire family.
I am sure that other members will be along shortly to join in on the discussion. We are glad that you are here. We know exactly what you are feeling right now. Lean on us, family and friends. You'll need the support.
All Best Wishes,
Heather
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