Newly diagnosed and feeling lost

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Newly diagnosed and feeling lost

Postby ValB » Mon Jun 04, 2012 9:53 pm

I am newly diagnosed with MS. I still don't know how to feel about my diagnosis still, everything is just happening so fast. It all started with Optic Neuritis, which is very scary ordeal if any of you have ever had it you know what I mean. I don't know if it is "normal" when you are newly diagnosed to feel so lost and alone. I have a very supporting family but I feel like they don't truly understand. Tomorrow I am suppose to start my Avonex regiment, I'm seriously dreading having to begin to inject myself for what could be the rest of my life.I picked up my Avonex a week ago and every time I look in my fridge the reality of having MS becomes more real. For the past two days I've been extremely stressed out and feeling a lot of anxiety, and wonder if I'm going to be able to give myself the medication. When I went to the doctor about two weeks ago he told me if I thought I needed any kind of depression or anxiety medication just to let him know. At the time I didn't think I needed it but I wonder if I do or not. So what I would like to know how did other people feel the first time they began a treatment regimen for their multiple sclerosis. Did anyone else feel the same stress and anxiety? Does depression medication help in the beginning?

Sorry if I ran on a little or for any bad grammar.
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Re: Newly diagnosed and feeling lost

Postby Kiyaan » Tue Jun 05, 2012 12:26 am

It is definitely normal to feel alone and lost; especially when first diagnosed. For me, it felt easier to deal with as time went on and I made my peace with the fact that I do have MS. I was grieving prematurely for what seemed like a loss of my self-worth and manhood more than anything else. Eventually I had to get on with life, I started attending my classes, going to work and working out harder than when I was "healthy".

I am not sure if anything that I am doing works, it just seems like the best bet in the absence of concrete proof. I read Roy Swank's book and then found George Jelinek's "Overcoming Multiple Sclerosis", both of which offered a bit of hope in a very, very dark time.

My suggestion is feel like shit if you must. Cry, get angry or sulk but just keep something in the back of your mind : None of it is that important. We all end up dead anyway. So I refuse to (or try to, on most days) accept anything less than what I was doing before I was diagnosed to the point of over-doing it sometimes; thus far, I have been largely spared with the exception of a few very mild attacks. It is not in my nature to be optimistic, but I'm learning.

P.S My father had MS, my cousins have MS and I am certain that not even my mother understands this disease. She is loving, caring and supportive but she just does not understand it and if I have my way, she will never have to.
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Re: Newly diagnosed and feeling lost

Postby gymbuff » Tue Jun 05, 2012 1:02 am

Hi ValB

I was diagnosed just 24 years ago. My wife and I cried for 3 days as we told people of the diagnosis. Then we got a grip of ourselves and started making plans for the future. Life will never be the same again for you, it will be different. MS won't kill you but something like cancer will. Stay positive. Do as much as you can for as long as you can. After the initial bout of tears, anger and frustration have passed you will be OK. Self injecting isn't too bad I did it for years before switching to Tysabri. 24 years on and I am still here :-D

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Re: Newly diagnosed and feeling lost

Postby FLJhawk » Tue Jun 05, 2012 10:14 am

Try to avoid taking more drugs than you really need to. Anti-depressives can be nasty - I was prescribed them, bought them but never took a single one as I figured I needed to face this disease with a clear mind (well, as clear as it can be given some cog fog at times) and with as few drugs in me as needed to keep me healthy.

Your feelings are normal and we all go through it, but after you do the injections a few times you get into a routine. It is a constant reminder that you have MS, but you have to look at it as being something you can do to, hopefully, rein in the disease. Be thankful you have the funds and live in an age where there is treatment that has a chance to help.

I hope you are on a good MS diet, as that is also something you can do to give you some sense of control and which could help every bit as much as the DMDs.

And, you may not have to be injecting the rest of your life. BG12 is hopefully coming out later this year, which is a pill, and which is proving to be very effective. I think most of us can stomach (he he) a pill better than injections.

Take care and hang in there.
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Re: Newly diagnosed and feeling lost

Postby Peanutsmommy » Tue Jun 05, 2012 8:02 pm

Hi there. It's perfectly normal to be feeling the way you do. I felt anxious before starting copaxone. The day the nurse came to show me how to inject myself was the worst. I had hurt my back some days before she arrived. When my family and I sat down to listen to her I couldnt resist and burst out crying in disbelief of what was happening to me. I cried for days. Its been 3 1/2 months since my first shot and it does get easier. I inject everyday. Most times I don't want to but know it's for my own good. As far as anti depressants, try to stay away from additional meds. They will less with your body in son many other ways. Wishing you the best! Keep us posted.
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Re: Newly diagnosed and feeling lost

Postby Peanutsmommy » Tue Jun 05, 2012 8:03 pm

*mess with your body in so many other ways
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Re: Newly diagnosed and feeling lost

Postby Grumpster » Thu Jun 07, 2012 12:29 pm

I felt exactly the same 10 years ago when first diagnosed. I went on anti-depressants about 2 years into my diagnosis as I was self destructing and having very dark thoughts. After some time I started to deal with and accept the situation. I went off the anti-depressants after about 2 years on them. I can say that they did help me, for a while, when I was at my lowest point. If you look at some of my posts, specially one titled MS Depression and me" you will see where I was. Now I am coping. I am on Copaxone injecting daily, and things are ok. I did not stop living and I try to do most of everything i did before. I too started with Optic Neuritis as my first symptom. Hang tough. Let your emotions out. It is normal to feel like you do. Then try to keep a positive attitude. It is hard, but keep at it. I used meditation and diet to help me. People have a hard time understanding MS and the severity of the disease, especially when you are in the invisible symptoms stage (which I still am 10 years into it). It is good you have family support, just don't expect them to fully grasp what you are going through. This is a great place to find support, ideas and the like, so I am glad you found it. I also suggest going to a newly diagnosed seminar, which are held fairly regularly by groups such as the MS Society.

Take care

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