Hi Nancy,

Well, you've obviously gotten some good responses. I just wanted to say I am sorry about your diagnosis. I have had MS for probably about 30 years, but was only diagnosed not quite 7 years ago.

I was encouraged by my Doctor to start one of the meds right away and did just that. I was on Avonex for 1 year, and did alright, but I have now been on Rebif for about 5 years. It is strange but the Rebif given 3 times a week and being stronger does not give me the side effects that Avonex did. I think it is because it stays more evenly in the body. Having said that, I want to stress that Avonex did not give me that bad of a reaction. I usually felt kind of tired and bad the next day, especially in the morning, then it would be over.

Do not be afraid to start one of the medications if you and your Doctor feel you should. Many Neurologist are now recommending that even some people who are "probable MS" be on these drugs. Before I started Avonex I was scared to death because I kept hearing that I would be sick, etc. For me it has not been that bad.

OK Nancy. Time for the down and dirty about my Avonex! When I first started taking it, I had some mild flu like reactions, felt achy. I take two Aleve the evening I take my shot. I continue to have some really wierd dreams. Both my neuro and MS specialist I saw in consult say that this can be from the Avonex. They say it's all part of the 'flu like reactions'. I don't know, I never had really bad dreams when I had the flu. These aren't bad dreams, just totally wierd, close to sience fiction.

Sometimes I have some swelling and inflammatrion around the injection site. It might come up three or four days after the injection and last a week or it might never occur at all. I have only had one bad injection reaction. Last December I somehiow hit a 'nerve root of a nerve root of a nerve root and how many more 'of a nerve roots' can I go back. Anyway my neruo said it was some obscure nerve root. Bottom line is that I had severe pain in that leg for about 6 weeks which caused me to walk wierd and put most of my wieght on my other leg which gave it problems. After two courses of Cortisone dose packs, and some Lortab later, it is all past hx now. But it did make everyone else pick up my duties at Christmas!!!!

So that was the down and dirty about my Avonosx hx. But my one lesion is still the same. Worth it? Yes!!!!!!!

Dear Doydie and Virginia,
Thank you both for taking the time to reply.This site has been a wonderful place to come to due to all of you out there.Thank you all!!! My neuro did classify me for now as "probable MS " ,which I feel means definite MS really,esp. with the MRI and tap both indicative of MS,however mild at this point . I am definitely going to take one of the meds,will wait to see what my neuro thinks,also just made an appt. with an MS specialist on Long Island who supposedly is world renowned for her MS work,esp. with pediatric cases. {I live out on Long Island }I am going to ask her about the drug Tysabri also.For now I started a vitamin regime along with some fatty acid oils,and am trying to not get too stressed,like when I accidently got some soap in my rt.eye [which I didn't realize at first,]I started thinking I was having that optic neuritis I read about!! Afterwards I realized I really need to take a deep breathe about all of this!!!!Thank you all again,I wish you all well,pls.keep in touch with me,I love the support and kind words. Nancy

Nancy, I hope this wasn't your goodby from the forum. You are more than welcome to stick around. Other people who are in the early stages of dx need people like you to give them encouragement to stick to it, keep active with their doctor, etc. You seem like you have done research since you mentioned destressing your life and taking vitamins.

I am only assuming from your username that you are a nurse. I was one for almost 30 years before I had to quit. They were 28 of the most wonderful years of my life. Take care and hope to see you back here!

Hey Doydie,I am definitely sticking around !! I am an OB nurse and have been nursing for 26 years.Like you I loved the job,am now fearing that eventually this will be coming to a close for me.Even though I love OB,it's a very stressful unit. My health definitely isn't worth that.Did you have a hard time working with the MS when you were working? I appreciate your posts,thanks.Nancy

I am on Copaxone now and have been for about 4 years with time off during two pregnancies. I tried Avonex for a year and the side effects were too rough for me. I think C is the drug for me and I do believe it is working for me. I hate the shots every day but the needle is much smaller. The IM shots were really hard for me.

Starting a therapy was a big step for me. It was the only way I could do something to take control. I would recommend starting a therapy to do something positive for yourself. Give yourself a break for awhile. Being dx'ed is extremely traumatic. Take care and welcome to the board.
Jean

Nancy, at first the only hard thing to do was to reassure all the staff that I was OK and to answer all their questions. Since I had been in the hospital as an emegency for a week, they all knew my dx. One of the things I liked the most about nursing was the education. So I never held back anything about MS. I thought it would just be a wonderful teaching experience.

When I found out I had it, I was on the nuero unit and I asked the nurses for a neuro book so I could study up on it. They had the most archaic book I had ever seen. Then when I got home I got out my old med/surg book. What a mistake!!!!! So I went down to Barnes and Nobles, sat myself down with several books, got on the internet and found out that it wasn't all about preventative bedsore and aspiration pneumonia care. See, I went to school in the ealy 70's and that's all MS care was. So I found out it wasn't a life sentence. I also used my experience in my teaching of my patients. When my newly dx cardiac patients thought that their life was over, I gave them a litle of my hx.

I did fine for 2 years. Then I started to realize little things like not being able to remember some of the very basic cardiac drugs and then the cardiac surgeons names. It's kind of hard for your patients to trust you when you can't even tell them the names of the cardiac surgeons after their cardiac cath. Luckily, one day after a couple of days off, one of my legs went out and I called in sick. I never went back. So I never had to make that heart wrenching desision to have to quit work. God took care of it for me.

I had good benifits from the hospital. Between family leave, unused sick days, vacation days and everything else, I was paid for another full year!!!!! Then I went on Short term disability and then SSD. My SSD check is stillll bigger than my husbands monthly income. But he is just a pharmacy tech. So nursing has taken care of me and when I turn 62 I will be able to draw my pension from the hospital.

Thanks JMAK,I appreciate your post.I am feeling that the copaxone might be the way to go for me also,I'm not crazy about the daily shot idea but it definitely beats the alternative of possibly getting worse!!! I know I do need to chill out alittle as well. Planning on going upstate for Easter to see my family which should help tremendously. Hey Doydie,thanks again!! Everyone at work knows my situation since my nursing manager blurted it out at the last staff meeting!!!Oh well!!Like they wouldn't have found out anyway.I just wanted to keep it alittle quiet for awhile.Hope everyone is feeling great,will keep posting! Nancy

Welcome NancyNurse, I am on Avonex. I started it when I had my first episode. that was three years ago and I did pretty well. I am having a relapse right now however, I have to wonder if it would have been much sooner if I wasn't taking this medication. Only time will tell, but I have to say Avonex has served me pretty well.

Good luck and try and stay positive.

Dear Penny Lane,thank you for responding.I'm sorry to hear that you are having a relapse.I hope that you are feeling better very soon.Glad to hear that the Avonex was okay for you. Nancy