I think I'm fine

[Leena.K]

Hi everyone! So I was diagnosed in 2011 I was 14. I have double vision in my right eye I've had it for 2 years now. I've never had or felt anything else. honestly I don't think I have MS maybe I'm still in denial, but I've met so many MS patients and they're seriously struggling, unlike me I was really happy and positive until I started taking Avonex seriously I feel like I'm being tortured.

I got depression and I became suicidal I started cutting and pushing everyone away. I hate it when my parents treat me like I'm sick cause I'm not I'm fine. I did obviously get a MRI but I still think I don't have it. I read that double vision doesn't need medication. Oh and have I mention the pain and the horrible fever I get after the injections. My body is really weak and it won't get used to it. I can't go out on the weekends anymore and I refuse to tell my friends or anyone but my parents that I have MS.

I don't want anyone to treat me like I'm sick cause I'm not!!!!!! I stopped taking Avonex for two weeks cause I wanted to focus on my final exams and I ended up not taking them for a month. So yesterday my mom forced me to take it, I couldn't sleep I couldn't eat I just seriously wanted to die its really not fair.

Next week I'm getting another MRI so I'm really trying to be positive but I just can't, I told my parents that I don't want to take the injection next week but they will probably force me to it. the doctor gave me vitamin D once a week for 12 weeks. I drank it all at once and I almost choked to death. Didn't know it was that bad.

I really want to take depression pills but my parents think I don't need it, I do have the best parents in the world seriously they're always worried and they really love me but I treat them like crap and I feel so guilty about it.

I know I sound so negative but I feel like I'm seriously wasting my youth am I going to be like this all my life (I'm 16). depressed lazy and suicidal. I don't know anyone who has double vision like me so it would be nice to know that I'm not the only one

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[newbie but goodie]

Hi hon, so sorry you are diagnosed with MS but glad that you seem to be doing well!!

As far as I know depression is not an uncommon side effect of Avonex. Maybe find this info on the drug's website and show your parents? It's also common for people your age and people who are diagnosed with chronic illnesses to become depressed so do try to show them something so you can get help.

I hope that you can become more comfortable with your meds. Have you considered visiting the medication boards here? People post the ways they deal with those nasty side effects and it can be so helpful. Of course you would want to clear advice with your parents and doctor but you an get great ideas there.

[22cyclist]

Leena K.: I am sorry you are having such a hard time right now! Avonex can indeed cause depression. When you see your doctor maybe you can talk to him/her about it. There are other medications that do not cause depression.

There is a teen board here as well if you would like to speak with others who have MS and are around your age.

Do try to talk with your parents again like Newbie but Goodie said. Hopefully they will be willing to listen to you about an anti-depressant this time.

Best of luck with your MRI.

Take care
Lisa
Moderation Team

[Torn]

I feel bad for you and can understand your frustration. Speaking from experience, please don't stop dmds. Maybe a switch to a different one? Tell the doctors about your depression issues and see if they will make some changes. Don't give up! There are so many people who are here to help support you. It is hard, but you have so much still to look forward to. I'm here if you need to vent and there are so many others too. Hang in there!

[Borderdrama]

Age

All of a sudden I'm in my late seventies! And to top it off, they found a cancer (non-small cell adenocarcinoma) in my lower, right, lung lobe last spring. Old C/T's showed that it had been there, un-diagnosed, for at least 26 months. They say it is still in the first stage so I had a wedge excision of my lower right lung lobe 61/2 weeks ago, and a PET scan taken two seeks ago shows no cancer.
An original oncologist assigned to me by the University system medical facility planned several (undetermined how many) chemotherapy sessions as a precaution against lingering cancer cells. I went and got a second opinion and he opted for observation with C/T's about every 3 months. I suppose the moral of this story is to not hesitate to get a second opinion. At my age, I think chemotherapy would take as much or more time off my remaining life than add to it. I feel very good now and have almost regained all my strength since the surgery.

[tortis]

Avonex-Depression

Hi and Welcome. I wish it were for a different reason though.
I was on Avonex for a year and I can say it caused me severe depression. I also got really bad flu symptons from it. I had to go off of it but see if your Dr. can get you on a different one. When anyone gets real depressed I worry about them. Just as 22cyclist said there are many new drugs out there now and you should not have to feel that way. Please let us know how things are going.
PEACE
Tortis

[abeautifullife]

Sorry you've been suffering so much! A few points that I hope will help you:

It's possible to have MS and be "fine." I am in my 30s, have RRMS, and feel 100% fine. I'm categorized as "asymptomatic." I've also met a number of individuals through support groups who are basically like me. The disease can progress at an alarming rate, but it doesn't have to. I have a good friend who was diagnosed at age 11, now in his 30s, who has no disability. So don't feel like you will absolutely fall apart because you have MS. Whatever gets thrown at you, you can manage.

Re: drugs, I also take interferon therapy (Rebif), and I've tolerated it very well. The side effects you're describing sound severe - you sound like someone who doesn't tolerate interferon therapy. Good news - there are several other therapies out there - call your neuro (or get Mom or Dad to call) and try out another one. DMD therapy is designed to keep you feeling "fine" as long as possible, hopefully forever. It shouldn't be making you feel this bad in the short term, though.

Just know too that you're quite young and I firmly believe that you will see a cure for MS in your lifetime (as will I, and I have 20 years on you!). The therapies for MS are improving every day. Just stick this out for now with a medicine you can handle and know that better things are coming.

[SNOOPY]

Hi Leena.K,

If I am reading your post correctly you were diagnosed at the age of 14 in 2011? That would make you 16 now?

You are now of the age that your parents cannot make you take medications, you have the choice to decline and their is nothing your parents can do. You cannot be forced by your parents to take medication, it is your decision.

Having said that: Your parents only want the best for you and are concerned about your health. They do care about you.

Talk to your Neurologist about other treatment options that might better suit you. Learn as much as you can about the disease you have.

I don't want anyone to treat me like I'm sick cause I'm not!!!!!!

No, you are not sick BUT you do have a serious disease. You may feel fine, and that's great, but this disease has a way of turning on you when you least expect it

Please speak (calmly) to your parents about the medication you are on, the possibility of a different medication and how you would appreciate it if they would not treat you as if you are sick but like they did before learning about MS.

Take care, Leena.K

[onlyairfare]

Leena.K, I'm sorry you are having such a hard time with your diagnosis and your medications.

When I first started my MS medication, my doctor and I chose Copaxone because I didn't want to deal with the side effects of Avonex, like fever and aches and pains that felt like the flu. Now I take Gilenya, which is a pill and I don't even have to mess with the shots any more.

Avonex can definitely cause depression as a side effect - it says so right on the package insert. So talk to your parents and your doctor about taking a different medication for your MS, one that doesn't cause you such problems.

By the way, I have had MS for 38 years now, diagnosed when I was only a little older than you are. I have a family, a great job where I still work full-time, and a great life where I still do almost all the things I want to do despite MS. Please know that can happen for you too, and yes, I think you will see a cure in your lifetime.

And keep us posted on how you are doing. MSWorld is a place where we understand and care about you.

[Special Kay]

I'm a lot older than you, but identify with a lot of what you're saying.

I don't appear to have MS and mostly feel perfectly well (and function better than a lot of my "well" friends). But as someone said upthread, I may not be sick, but I do have a chronic disease which, untreated, will get worse. But don't let others pigeonhole you as "sick." They mean well, but it's a slipperly slope. Attitude can be empowering or disabling.

I took Avonex for 5 years and was miserable the entire time. In fact, my symptoms got worse as time when on. Learn from me: switch drugs! Your neurologist should be open to discussing other options with you; there are a number of them. You should also discuss your depression with your neurologist so it can be treated as well.

Instead of fighting your parents, tell them you know they are concerned for you but you also know there are other medication options that you might tolerate better and you want to look into them.

[moz205]

Borderdrama- my situation was very similar to yours. I also was diagnosed with adeno ca of the lung, had surg and adjuvant chemo. to beat the tar outta any "lingering nasties".

I was lucky enough to be at a major NYC hosp with a top surgeon. (I work in healthcare) Anyway, then seen by oncologist that I work with who put me on the chemo. Wasn't too bad and lost no hair.

Funny that my MS seemed to go away immediately after the surgery. Go figure. But the symptoms did slowly return.
Best wishes