Skip to content
My WebMD Sign In, Sign Up
Includes Expert Content
CLinically Isolated Syndrome
avatar
An_244671 posted:
I was diagnosed with CIS on Thursday. 1 lesion on brain stem, optic nerve damage..some old, some new,...olgiclonal bands in spinal fluid. I was hospitalized with facial paralysis and dizziness, double-vision. All of these things that came out of no where.

Since it is my first episode, hopefully the last, it is diagnosed CIS. But I am supposed to take Copaxone daily to help me not have a future episode. I don't even know what tj call it...episode? Attack? Exasperation? I don't know!!!

I have to meet with this guy to find out how to give myself this shot.

I am just wondering if others have a similar story? Does it work? Does it keep it from coming back as often? Does it have side effects? I feel like all of a sudden my life is not mine as much...I am not sure about committing to taking this for the rest of my life if I don't even have what is considered MS until I have another episode. I'm scared to take it and I'm scared not to take it!!!

I am alone in my medical decision making. I have no children, husband, or dependants. I have parents, sister and nieces. I want to do whatever I need to do to not become a burden on anyone in the future...but I am so foggy headed right now as I'm still getting over this thing that has hsppened to me, my body, vision, balance and mind. I am having a hard time researching it.

Does anyone have any advice or information about this drug and if it makes sense to take it? Thank you!!!
Reply
FirstPrevious12NextLast
 
avatar
xperky responded:
Hi, I kind of understand your feelings. I've had "possible MS" for a few years now, but only taking drugs to treat muscle spasms and other symptoms for now. I have been diagnosed with Fibromyalgia as well, so there are medicines for that for me too.

I worry about not taking a preventive medicine but would also worry about an unnecessary medicine if I did take one. It is such a long wait to see if things get worse or not.

I'm interested in what others have to say about your question. I hope you start feeling better soon.
 
avatar
Rory26312 responded:
Hi

The majority of CIS cases go on to be diagnosed with MS at a later date.

One of few things we know about MS is that early diagnosis and treatment can help with your long term prognosis.

It is possible that you will go years without symptoms,(alltough this does not mean that that the disease is not active) and then again you could flair at any time there really is no way to know which way it will go for you.

I have never taken copoxane so I cannot advice you about it but the decision on whether to treat or not is yours and yours alone so do not let any bully you into a decision you are not happy with.

Hope this helps

Rory
 
avatar
An_244671 replied to Rory26312's response:
Thank you so much! I am still on the fence, but having others responses who are in similar situations, makes me feel less alone. I guess we are all going through something that is somewhat out of our hands. I am the type of person who wants to take action...but sometimes the best action is to NOT take action.

The main thing I know is right is to exercise, take vitamins and amino acids, and eat right. I do these mostly anyway...but I need to be more consistent!!!

I just don't want to make a mistake, in either direction, about taking Copaxone. It just scares me to commit to something like this for the rest of my life...and I worry what the effects would be if I had to give it up at some point.

Anyway, I guess we are all going through these decisions. I appreciate everyone on here because it made me feel less alone.

I hope you are feeling well and get better every day! Thank you for taking the time to answer my post!!!

Kindest Regards!
 
avatar
An_244671 replied to xperky's response:
Are you choosing not to take the meds, or have they not been prescribed yet? I am only asking because, if you choose not to take them yet, I wanted to ask how you came to that decision and if you feel happy about it.

I am still on the fence, I need to make up my mind because the drugs are on their way. I'm just scared if the commitment without really knowing the benefits or possible problems.

And I considered starting them...and then going off it I changed my mind. But then I'm not sure if there are worse side effects to go off of them after beginning them.

Maybe I'm over thinking. I guess, like you, it's hard to not know. And all of us on here are dealing with these different issues.



I appreciate you taking your time to answer me! I hope you are feeling better each day!

Kindest Regards!!!
 
avatar
xperky replied to An_244671's response:
My neurologist doesn't want to prescribe the meds for me yet. He is waiting for a change in my brain lesions or another episode of optic neuritis to be sure.

It's all such an unknown! One thing I've learned in life is how little control we actually have. We are doing well just to react in a healthy manner to whatever comes our way.

I think your doctor must have good reasons to prescribe your medicine. Remember, you can stop or change it if you develop side effects. Just keep in good communication with your doctors. Develop a team and keep them all advised about your details.

I wish you good health!
 
avatar
An_247592 responded:
Hi I understand your concerns. I was just diagnosed with CIS last week. I actually don't have any symptoms. I had a MRI on my spine becuase of an injury and saw lesions, then went and did a MRI on my brain were there are a few on my brain. The lesions are inactive therefore thats why I don't have any symptons. I'm struggling with the thought of taking meds for the rest of my life but also struggling with the thought of getting MS. I have 4 young children and live a very active lifestyle. I do know that my sisters best friend has MS for 10 years now and has been taking copaxone, and hasn't had a flare up in over 7 years. I'm really struggling with this decision. I am going for a second opinion, but I don't think it's going to do me any good from what I'm reading online....it is what it is. Like you said I feel so alone and is struggling with this decision. I am married and have family around me but no one has been in this situation. If I don't do it, I'm going to get MS but if I do it I'm still going to get Ms? My head is spinning. I'm so scared. I've never had an attack or any symptoms, so it's hard for me to just start taking meds when I feel perfectly healthy. Any advise will help.

thank you so much, and I hope everything worked out for you.
 
avatar
hackwriter replied to An_247592's response:
Dear An_247592,

If indeed you have "benign MS," that doesn't mean the disease will definitely become active some day, it might not. When you consult with the second opinion doc, discuss your concerns with him/her. You don't have to make a decision right away. Do research and ask a lot of MSers for their feedback. If you aren't symptomatic right now, you've got time to think, there isn't any pressure on you right now to choose a drug. Hesitating to treat your condition will not automatically doom you to a lifetime of disability.

The benefit of doing research is that you'll discover what's real about how the therapies work. If you decide to start a disease-modifying therapy such as Copaxone, that does not guarantee a halt to future attacks and progression. Our drug therapies were designed to slow progression, but they work differently for everyone. They were not designed to send the disease into permanent remission or to improve symptoms. We still have flares while taking those drugs. If your friend has been in remission for seven years, that's great, but not typical.

Take a deep breath, you're okay, and you'll be okay no matter how this disease plays out for you. There is no wrong decision. If you choose to do nothing right now because that's what your gut is telling you to do, then it's the right choice.

Kim
 
avatar
jvez3 responded:
hi i can relate to what you are saying, i was diagnosed with
benign ms in 2005 and my dr did an MRI and i have some lesions,i have tingling in my right leg and foot, and a few other symptons,in the last 2 years things have progressed,currling of my toes, pain in my eyes after being in the sun,and more,i go see my dr 2 times a year and he does a MRIevery year and he says that the MRI hasnt changed which is a good thing, so he said that it is benign ms, but what is frusateing, is that with all these new symptoms, he still says that it is benign,many people told me i should get second opinion,because with benign ms you shouldnt be getting more symptons,i am in pyscial therapy for my legs have pain in them everyday,my question is this should i get a second opinion, and also did lumbar and he said that they saw something small in the test,would like any in put that you or any body else might have thankyou very much,
 
avatar
MamaKing4 replied to jvez3's response:
I would get a second opinion. Did you doctor put you on meds? My doctor wants me to start meds without having any symtoms. I have so many questions. I don't know where to begin. If I do meds, what are my chances of it turning into full blown MS? If I do get MS, will my symtoms be less because I'm already on meds? I'm so scared for whats to come. I feel like Ive been diagnosed with cancer before even getting it.(without the death sentence) just waiting for the day for it to happen. I would get a second opinion if you having symtoms for sure, maybe they over looked something. Did they do a MRI of your spine as well?
 
avatar
Neil S Lava, MD responded:
I understand your concern about starting medication. Copaxone is a medication that is very well tolerated and has been around for many years. We know it is safe long term.
No one can predict whether you will have other symptoms of multiple sclerosis but statistically it is more likely that you will have symptoms then not. Studies have shown us that the sooner someone starts medication the better they do in the long run.
Having said that, you must be comfortable with this decision. If you need another neurologist to tell you the same thing than I think that would be a good idea. Most of the neurologists who specializes in multiple sclerosis try to start patienst on therapy as quickly as possible.
 
avatar
lazul3 responded:
Hi, I was diagnosed with MS in 1996, after 20 years of mysterious symptoms that had gone undiagnosed.

I tried the steroids and shots, but for me, the side effects were uunbearable. Many people can take the shots or injections with nno problems, but you have to try for yourself to see.

What I can tell everyone with this disease is, no matter what treatment(s) you take, the one thing that will definitely help you without any side effects, aside from lowering your risk of heart attack, stroke and diabetes, is a very low-fat diet. The Multiple Sclerosis Diet book by Dr. Roy Laver Swank and Barbara Brewer Dugan (available on www.amazon.com ) made the biggest difference in my life. I lost 25 pounds effortlessly, and my energy and stamina improved. And I had no symptoms or flares, aside from permanent damage from previous exacerbations that are with me no matter what I do, until I pushed myself too hard physically, which is warned against in this book.

I would recommend this book to everyone with MS. Whether you take meds or not, low-fat, healthy eating will do nothing but help you!

Best wishes to everyone!
 
avatar
rufusbuster2 responded:
I have been on copaxone for two years now. Before that it was aavonex for 8 years. Have had ms for 17. You cant really ddetermine what med works for ms. everyone is different, as i am sure you have been told. Copaxone is a daily injection with an enjector that is so easy to use. Avonex had a long needle that was jabbed into muscle area. It was a long needle. Side effects for 2 days. felt horrible. no side effects with copoxane for me. was happy with the injection. But remember all meds affect ms patients differently. good luck!
 
avatar
Jlowo3 replied to rufusbuster2's response:
Thank you! I did begin Copaxone 6 months ago. Other than a sort of rash at site areas, that last a couple of days, it causes me no trouble. The injector, is so easy, like you said. I had to do one without it one day...I went too deep. Don't think I'll do that again.

I was so scared when I originally posted this. I am less so now. I don't like it one bit. But no one does. Still have issues with sight that change when hot. Reading is ok for ten minutes...then it's painful. Balance is not always great. BUT! I'm so very much better than I was. Grateful for that!

Thanks for replying. God Bless and Take Care!
Be well and Happy.
J
 
avatar
rosssmom responded:
I was diagnosed with MS in May 2012. My Nuerologist put me on Copaxone and it was horrible. It felt like my whole body was being poisened, left terrible knots in my skin for days, even after the hot and cold compress's. I tried everything they told me. It made me terribly sick. I didn't feel well. I had no life to me at all. I stopped it on my own, switched Nuerologist. I've been off of it for 9 weeks, this is the best I have felt since I got doignosed. My energy level is back, I can think clearly, I can function. Now the new doctor wants to put me on Avonex, I'm very scared of that too, since everyone of the drugs have horrible side effects. So I'm not sure which avenue I'm going to take yet, but I hope this helps with the Copaxone..Goodluck My Friend..


Featuring Experts

Neil S. Lava, MD, is the director of the multiple sclerosis clinic at Emory University in Atlanta. He has been treating multiple sclerosis patients si...More

Helpful Tips

the walking drug, ampyra
was diagnosedwith MS in 2000. my walking has been getting harder to do but i was still able to work. i recently had an exacerbation of my ... More
Was this Helpful?
51 of 62 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.