This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi,
I was diagnosed with CIS last year after having an episode of double vision (and an MRI) and have been struggling with the decision to start drugs which were recommended to me the day I was diagnosed. However, after my MRI got worse (giving me the "official" MS diagnosis) and I received a second opinion from another MS specialist who also recommended drug therapy I have decided to start. BUT, I am PETRIFIED about it making me feel bad since I currently have no symptoms of MS, just a crappy MRI. I put off googling and searching online since I was afraid of what I would find, and sure enough, most of what is posted on the internet is negative. So I am attempting to reach out to anyone who has a POSITIVE story to share with me that won't scare the you-know-what out of me!!! I completely understand the reasoning behind the drugs but I am also a firm believer in the "if you don't use it, you lose it" mentality which for me means continuing with my life (work, playing with my kids, and heck even doing laundry!) in order to keep those neurons firing as much as possible. So I really don't want the Avonex to keep me from my "normal" life! Of course the doctors made it sound manageable (i.e. flu like symptoms that go away with Tylenol/Advil) but just hoping I can hear this from a real person

Thanks!
Andrea from Canada

I agree you 100%. I have ppms, have had it for 17 years & never done any drugs. I walk with a cane and drive. Back then they were not pushing the drugs so hard & did not believe you could benefit once you are progressive. Anyway I was so allergic I could not take anyt drug or supplement. Four years ago I started following a thread on Low dose naltrexone on this website. It is a very low dose so I thought I could try it. Three years ago I started taking LDN at 3 mg transdermally every second night. Even at my age (60) and stage I have had steady improvement in 11 symptoms,and complete cessation of several. I have had NO MORE PROGRESSION. LDN has been used by Dr Bihari in USA for 10 years and he said that in most cases it stopped all progression. I wish I had know about it 10 years ago. I believe all newly diagnosed should start with LDN & then they will never progress. Google the Low Dose Naltrexone and MS website you will find lots of happy stories. Good luck.

I started Avonex 3 years ago. Like you, I had no symptoms by the time I started drugs. It is hard to feel fine, then take a shot that makes you feel poopy. I am 52 years old, still working full time, am a grandmother, and have an active life. I decided to go through with treatment so that in case MS takes its toll, I won't look back and wish I had tried treatment. Do I have side effects? Yes, still. For me, they haven't gone away. I just plan around the shot each week. As long as I can veg for a day, the rest of the week is great. My neuro prescribes Norco for managing the discomfort of side effects. Tylenol/ibuprofen wasn't kicking it. I have settled into my routine and life is still good. Different, but good. I have absolute support from my husband. He requires nothing of me on the day I inject. His support keeps me going.

For me, injecting at bedtime and "sleeping through" the worst of the side effects didn't work. Sleep was elusive. I have more success managing things by injecting in the afternoon. I am awake and able to take meds in a timely manner and avoid waking up in the middle of the night with fever. By the time I go to bed, the symptoms have peaked and I am on the downhill side. The following day, I don't plan to do much of anything but rest. Some weeks are better than others. Wish I could figure out why. It is what it is, though.

This post is not really what you asked for, but I felt like sharing my story with you. I want you to know that even with side effects, life is still great. I think many people get over any sides effects in a few months. I pray you will be one of those! If not, you will learn the best way to deal with any discomfort. As my husband often says, "Keep your eyes on the big picture." At the end of the day, we all have to make the decisions we feel best and walk on.

As an addition, many people post about hating needles and dreading the shot itself. While it is certainly not something anyone looks forward to doing, in the grand scope of life, come on! My youngest son is a Type 1 diabetic. Didn't hit him until he was 20 years old--a college student/athlete living far from home. Needles are a part of his everyday life--several times a day. I look at his courage and strength and my woes pale. What I wouldn't give to take his disease on myself. Micah is another source of my strength. Find yours--you will handle MS like a champ. What doesn't kill you makes you stronger!!

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Kelley

You probably have already started the Avonex, but I thought I'd share. I started Avonex somewhat recently. I take four ibuprofens right after the shot and I feel fine the next day. I don't feel sick. Maybe a little warn down sometimes, but it does not stop me from functioning the next day. I have already been on Copaxone and had a severe allergic reaction. I've been on Rebif and it just hurt like crazy. Not too bad about feeling sick, but I did feel sick enough to interfere with my day. I then tried Betaserone. The needles were thinner which was good and less painful, but I felt headachey, sore, and noticeably ill the next day. That was not going to work for me when bringing up twin toddlers. I do not test well for Tysabri, so I am on Avonex. I was afraid of Avonex since it was the only intramuscular injection and I heard the needle is large. I've seen it. Scary stuff. But, now you can order a smaller gauge needle and for the first time, I don't feel any pain when I am taking a shot. Sure it's uncomfortable, but not painful. The first day, I forgot to take any pain meds and I was shaking like crazy! My muscles were sore from all the chills I had. I did not forget to take the pain meds after that and have had no problems since.

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I'm a little acorn brown,
Lying on the cold bare ground.
Someone came and stepped on me.
That is why I'm cracked you see.
I'm a nut! I'm a nut! I'm a nut! ...
-Childhood song