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Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 8/31/2007 7:30 PM (GMT -7)   
Hey all,
 
I usually don't cross boards, but I am at my wits end.  I was told at the end of June that I have MS.  My doctors are telling me about other secondary issues that don't need meds to correct and that it's alright not to worry about them.
 
My major issue is with the Beta Seron injections.  Doing the shots in my arms and upper legs don't bother me.  The shots in my lower legs, stomache and behind burn.  It feels like I put a hot poker into myself.  Is this normal?  Is there anyway to help stop the burn?  What do you all use to cope with the side effects?  I can deal with most of it but I'm not even at a full dose yet and some days are so bad that I can't even go to work.
 
I just need to not feel alone and hopefully someone here can help.  I have talked to my Beta nurse on a regular basis, but I don't feel like she understands me.  She doesn't have MS, so I keep thinking, how do you know how I feel....Ya know?
 
Just the thought of doing this every other day for the rest of my life is really depressing.  I just want to sit and scream and cry.  I'm not sure I can keep doing this treatment.  It's effecting my husband, children, the rest of my family, and my job.
 
Does anyone ever feel like this?  Or am I just making too much of this?
 
Any help would be wonderful.  If I'm just whining, tell me that too.
 
Love,
Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  Starting Betaseron for MS
 
co-mod for Fibro


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 8/31/2007 8:13 PM (GMT -7)   
Hey Heather!!

Welcome to the MS board! I'm so so sorry u've been dx'd with ms, but very happy u've decided to join us here. We have so many here who are dx'd and on the CRABs meds. Not sure how many on betaseron, but i'm certain of at least one. She should be along soon to give u some input. I"m sorry, I'm not dx'd so can't help in this question, but just wanted to let u know i'm glad u'r here and hope u'll feel comfortabe posting anytime u'd like. We're so glad to have u! We have live chat's on Monday's at 6:00pm (cst) each week. That's a great chance to get to know the other members of the ms forum as well as getting some real time answers to u'r questions. Take good care friend and let us know how we can help u!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 8/31/2007 10:33 PM (GMT -7)   

Heather,

Welcome!  I am sorry the betaseron is giving you such a bad time.  I can't help much either.  I am on copaxone and that really doesn't have the side effects that betaseron has.  You are not at all making too much of this.  This is a really hard thing to adjust to. Hang in there, you will adjust and learn to live and enjoy life again. It does take time though.  Feel free to ask lots of questions and vent all you want.  This is a very supportive place.

love and prayers,


Gretchen
diagnosed: MS  July 2006
 
A person without a sense of humor is like a wagon without springs.  It's jolted by every pebble on the road.
Henry Beecher
 


Uprightnbreathin
New Member


Date Joined Aug 2007
Total Posts : 19
   Posted 9/1/2007 12:47 AM (GMT -7)   
I am not sure what med. you are on; however, I take Rebif and found the stomach a better place to inject with that. I know some of the others need you to inject once a week into the muscle. I have found out also that the sting with injection is much less if you wait for the alcohol on your skin to dry before injection.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/1/2007 3:45 AM (GMT -7)   
Heather H. said...
Hey all,
 
I usually don't cross boards, but I am at my wits end.  I was told at the end of June that I have MS.  My doctors are telling me about other secondary issues that don't need meds to correct and that it's alright not to worry about them.
 
My major issue is with the Beta Seron injections.  Doing the shots in my arms and upper legs don't bother me.  The shots in my lower legs, stomache and behind burn.  It feels like I put a hot poker into myself.  Is this normal?  Is there anyway to help stop the burn?  What do you all use to cope with the side effects?  I can deal with most of it but I'm not even at a full dose yet and some days are so bad that I can't even go to work.
 
I just need to not feel alone and hopefully someone here can help.  I have talked to my Beta nurse on a regular basis, but I don't feel like she understands me.  She doesn't have MS, so I keep thinking, how do you know how I feel....Ya know?
 
Just the thought of doing this every other day for the rest of my life is really depressing.  I just want to sit and scream and cry.  I'm not sure I can keep doing this treatment.  It's effecting my husband, children, the rest of my family, and my job.
 
Does anyone ever feel like this?  Or am I just making too much of this?
 
Any help would be wonderful.  If I'm just whining, tell me that too.
 
Love,
Heather

Hello, Heather,
 
I'm so sorry you have a diagnosis of MS.  It's a lot to take in, in a short period of time -- having a chronic illness, needing to take injections every other day for the rest of your life, having to juggle side effects and all that.  But you CAN do it..you must do it, if not for yourself, right now, then for your husband, children, the rest of your family, and your job.
 
It's quite OK to whine and vent and be scared, and then you'll start to find a place where you can accept all this and it'll be easier.  Just knowing that you are certainly not the first and only person to find this all so challenging at the beginning may help. We all did.
 
I've been injecting Betaseron for 14 years now.  I find that for me the burning most often occurs if I don't inject STRAIGHT in...if the needle goes in at an angle it seems to burn more. And also if any of the fluid leaks out, either before or after the injection, the area seems to burn.   I don't use the autoinjector -- I found that too bruising, so just use the needle straight.  I take comfort in knowing that the regular needle used to inject the Betaseron every other day is the SAME sized needle my friend uses to inject insulin -- several times a day! I figure if she can do it 3-4 times a DAY, surely I can do it every other day!
 
After injecting for awhile, I found for me that it was easiest to inject into my belly or upper thighs, so that's what I do. Yes, I know the instructions and the nurses tell you to rotate injections and use all those other areas -- but if pushed, they'll ALSO tell you that it's better to keep injecting in the same area regularly, than stop the injections altogether.  So that's what I do.  My recommendation is find the area that is most comfortable for you, and just use that, at least for awhile, until you get more comfortable altogether with the process, and then maybe you can rotate and find other areas that will work for you.
 
I also found that using the alcohol wipes caused burning, and caused my skin to dry out and itch and be painful.  After talking with my doctor -- and observing my friend inject her insulin **through her clothes!!** -- I came to this routine: make sure my hands are washed, and the area where I'm going to inject is washed -- and completely dry.  Make sure I prepare the injecting on a clean (in my case, cat-hair-free) surface..and just do it, without the wipes.  I've not ever had any problems doing it this way, and my skin surface is much more comfortable. But note -- DO talk with your doctor about this. The Betaseron nurses will never acknowledge that this is OK...but doctors are often more casual about it.  You'd just need to be certain that your hands and the surface you're about to inject is CLEAN and DRY.
 
 
As for the side effects: Are you taking something like ibuprofen, or tylenol when you inject, and injecting right before you go to bed? Sometimes this helps because you'll sleep through the worst of the side effects.  What I did when I started was take two ibuprofen (tylenol doesn't do anything for me, even for a mild headache!), then inject, then go to bed. I'd have a glass of water and two more ibu's by my bedside. If I woke up in the middle of the night feeling awful, I'd take them. If I didn't, usually I'd wake in the morning with a headache and body aches, so I'd take them, then.  After a cup of coffee, I was good to go.
 
Now, 14 years later, I still take the ibu's before I inject, and still inject before I go to bed, but sleep through the night, and only occasionally have a headache the next morning.
 
It did take 2-3 months before the side effects lessened, though. I see you just started this in June, not quite 3 months ago. And I started at full-strength (they didn't do the partial dose thing when I started, 14 years ago). I wonder if every time you increase the dose the side effects worsen again?  Maybe you should plunge ahead and go full dose, grit your teeth and work through the side effects, and be done with it? ***Of course talk to your doctor about this before doing anything but what he recommends!***
 
What other issues are troubling you, that the doctors are telling you to "not worry about"?  If you ask here, maybe we can give you our experiences with them, and you really WON'T have to worry about them....or we can tell you what you need to tell your doctor to get some attention for them!
 
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 9/1/2007 5:35 AM (GMT -7)   
Hello Heather :-)
 
   I'm more familiar with Copaxone than the interferons, but I hope Uppity's comments will be helpful to you and your betaseron issues. In many cases the side effects of the intererons lessen over time, just try to hang in there!   Please don't feel that you are alone, post as often as you like, even if its just to vent frustration or just let us know how you are doing. 
 
   Have you considered seeking out a local support group in your area?  Many folks find that helpful too.  Check out the National MS Society website at http://www.nationalmssociety.org/site/PageServer?pagename=hom_gen_homepage to see if there is a local chapter near you. 
 
   Good luck with the Betaseron, I hope things improve.
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 9/1/2007 7:32 PM (GMT -7)   
Hey,

Thanks for all the support. Uppity, You are wonderful. You've made me feel so much better. The other conditions are minor things. Migranes, reynaurd, and inflamation of the the 8th cranial nerve of the inner ear. I take something for the inner ear thing and on occasion for migranes, but the reynaurds only bothers when the seasons change, so my neuro said that I am more prone now to get minor things such as this and if it becomes a constant problem, I'll need to seek futher treatment for it. I figured it out the other night and I have been injecting for only 7 weeks now. I am at 3/4th of a dose and the side effects aren't as bad now, but when I was at a half dose it was terrible. I was sick all the time, and my 3 boys seemed to be more upset that I was sick than anyone else.

I haven't really told my kids much about MS. They are just too young to understand at 10, 5 and 3. My 10 year old knows more than the other two, but I don't think even he is old enough to understand the impact of MS and I just don't think it's a good idea to even try to explain it to him. He needs to be free to be a kid and not deal with adult problems yet. I just tell them that mommy is sick and my medicine is suppose to make me feel better. And they have never seen me do an injection ever.

Is that a good idea? I don't think I've even told them exactly what is wrong with me. My oldest asks questions about it, and I am honest with him, but I never give graffic details to him. Am I just being over protective? My mother thinks that I should tell Tyler (my 10 year old) more than what I have and I think she has gotten into more detail than I have with him. I just want this to impact their lives a little as possible and my husband has picked up alot of my slack without complaint and the kids don't seem to notice.

Thanks,
Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  Starting Betaseron for MS
 
co-mod for Fibro


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/2/2007 4:11 AM (GMT -7)   
Heather H. said...
Hey,

Thanks for all the support. Uppity, You are wonderful. You've made me feel so much better. The other conditions are minor things. Migranes, reynaurd, and inflamation of the the 8th cranial nerve of the inner ear. I take something for the inner ear thing and on occasion for migranes, but the reynaurds only bothers when the seasons change, so my neuro said that I am more prone now to get minor things such as this and if it becomes a constant problem, I'll need to seek futher treatment for it. I figured it out the other night and I have been injecting for only 7 weeks now. I am at 3/4th of a dose and the side effects aren't as bad now, but when I was at a half dose it was terrible. I was sick all the time, and my 3 boys seemed to be more upset that I was sick than anyone else.

I haven't really told my kids much about MS. They are just too young to understand at 10, 5 and 3. My 10 year old knows more than the other two, but I don't think even he is old enough to understand the impact of MS and I just don't think it's a good idea to even try to explain it to him. He needs to be free to be a kid and not deal with adult problems yet. I just tell them that mommy is sick and my medicine is suppose to make me feel better. And they have never seen me do an injection ever.

Is that a good idea? I don't think I've even told them exactly what is wrong with me. My oldest asks questions about it, and I am honest with him, but I never give graffic details to him. Am I just being over protective? My mother thinks that I should tell Tyler (my 10 year old) more than what I have and I think she has gotten into more detail than I have with him. I just want this to impact their lives a little as possible and my husband has picked up alot of my slack without complaint and the kids don't seem to notice.

Thanks,
Heather

I am not a parent. But I was a child -- as you were!  Children are VERY perceptive. 10 year olds are particularly perceptive. Another thing that happens with a child -- they tend to internalize everything, meaning they assume that the world revolves around them, and so if mommy is sick, it's somehow their fault! "If only I had been a GOOD boy!" "If only I had done what mommy wanted!!" and so forth. 
 
This is not their fault, or a flaw in their character. It's part of the maturing process, and happens with all kids.
 
You do need to tell them more, especially the 10 year old.  If you go to the National Multiple Sclerosis website, www.nmss.org and look around, you'll find a section on how to talk to yo ur kids, how to talk with your spouse and the rest of the family. They'll send you pamphlets and books you can share with your kids, even your 3 year old (for free), that will help you know just how much to share with each one at their age level and level of perception.
 
You don't need to inject around them, certainly, but you also need to be honest about the meds -- unlike meds they might get when they get sick -- "take this medicine and you'll soon feel better", what is wrong with you will never go away, and you'll never be fully like you were before you got sick. Doesn't mean the doctor is wrong, or mommy isn't doing what she was told to do...just that some illnesses can't be fixed like that.
 
And a BIG thing -- they need to be clear that you're not going to die.  Kids also assume that if mommy (or daddy) is sick, they might die, and the kids will be left alone. Again, not a flaw in their character, but part of their devleopment. So they NEED to know that you won't die any time soon, that you'll be around for a long time to take care of them...just that you might not be able to take care of them in quite the same ways as you did before you got sick.
 
Anyway. That's my take on this.  But do go to the National MS website and look for those pamphlets. Everyone I've talked to has been very pleased with how well written they are (they might even able to be downloaded), and how helpful they were with their kids.
 
As for migraines -- can't help much there. The Reynauds is something I experience too, but the meds offered seemed worse than the Reynauds, so I just deal with it. Painful, to be sure! I can even trigger it by poking around in the freezer looking for something for dinner.  I find running warm water over my hands helps dissipate it more quickly.
 
I hope this helps. Take care.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 9/2/2007 7:24 AM (GMT -7)   
Hi Heather,
 
    I have five kids that grew up with an MS parent and from my experience its best to talk to them and get them involved.   Kids, even very young kids, know when we are keeping something from them and get deeply hurt and worry.  You are not being overprotective, you are being normal!  No parent wants their children to have to deal with something like this, but from my experience the fear and questions that arise from not knowing what's going on is far worse than the truth.  Once my kids knew that we were willing to be open and honest and answer any questions they might have it made a huge difference.  You might be surprised at how much tremendous support you can get from your children. 
 
    There's a lot of resources out there, the one Uppity mentioned is excellent, be sure to check that out!
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 9/2/2007 9:00 AM (GMT -7)   

Hey Heather,

You have gotten some good advice.  You sound like a wonderful and loving mom.  My boys both know (10 and 13).  We talk about it very matter a factly.  They have seen me flare and have watched me get the solumedrol IV at home with a home health nurse.  They see me do my injections every night.  It has become a part of their lives too but they are fine.  Sometimes things like this, which seem so hard for children, become tremedous opportunities for growth.  My boys are developing wonderful empathy and sensitivity.  They see others now that are disabled and understand that that person it not someone to fear or avoid.  My ten year old knows that he has to do a disease report this year ( a well known 5th grade project at our school ) and he cannot wait to ask to do MS.  He is looking forward to learning more and sharing what he knows.  Good luck Heather.  You are very thoughtful and conscientious and you are doing a great job with your kids.

love and prayers,


Gretchen
diagnosed: MS  July 2006
 
A person without a sense of humor is like a wagon without springs.  It's jolted by every pebble on the road.
Henry Beecher
 


pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 9/2/2007 3:57 PM (GMT -7)   
Hi Heather once you adjust to the injections and side effects things will calm down. I take avonex IM every week.Some weeks I am so worn out from it (next day) I have found tylenol arthrits helps before the shot and before you go to bed then 2 more the next day.As for your kids...I dont have any of my own but iI have an extended family with younger kids..The MS society has a video out called "telling timmy about Ms" good for kids..The society sells that for 10 dollars.Your local chapter may even have a lending library.That is worth a try.You will discover if you havent already Ms is tough to hide..and children pick-up things you dont even think their paying attention to.So my opioin would be to include them..Good Luck and I hope all goes well for you..And the crying and frustration completely normal!!!Even when you are a seasoned vetran like myself.There will always be good days and bad. Easier said then done bt enjoy your good days..pokey79
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
 
 

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