What's Your Fear?

[LadyDoe]

I dont know if this is appropriate for this forum, but i felt it was something that ive wanted to talk about the last few days.

I am a 23 year old female with MS and about to take my 10th copaxone shot. Preparing for tonights shot made me realise how fearful i am of the future. I have/had/have/had <<insert appropriate word here>> dreams of becoming a neuroscientist and am almost finished.. but those dreams dont seem to matter anymore as I have a big nightmarish moster to deal with (aside from university).

I was diagnosed on 12th of Jan, 2010, but i am only beginning to feel the neurologists words sink in. I have a wonderful boyfriend (who has recently proposed) and supporting family, but i am still sinking into a world of deep and never ending thoughts.

The main theme of my thoughts (ok, lets use the word FEAR) is what is to become of me in future? Will i be a fast or slow progressing case? How will i work and provide for a family if i am struggling to work in a simple job now? what is the course of my MS? etc

Please, someone snap me out of this!

[Lyon]

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[Alicia]

Hi LadyDoe,

I was 24 when I was dx with MS. I had been married for 5 years and had a 3 month old baby. I was constantly thinking of how my life was going to end up. Was I going to be able to walk around Disneyland with my child when he was old enough? The "what-if's" can drive you crazy if you dwell on them. I try not to focus on that aspect anymore and live life to the fullest on a day by day basis.

I have been dx with MS for about 11 years and yes I have had problems here and there but I am doing well and can still do things that I did 11 years ago. I know that this can change but, I don't worry about it. Try to focus on the things that you are thankful for. I try my best to maintain a positive attitude.

Alicia

[Asia]

hi there

i was diagnosed at 9 when my symptoms were already severe, and i was in the wheelchair. i was a kid back then and didnt realise whats going on so i cant advice you how to deal with your fears, but i can tell you this - ms has been a part of my life for 18 years now and i live a normal life - as normal as possible. and i am happy with my lot. don't worry over much - ms isnt a death sentence, really. you're very lucky to have ms now - it's the age when ms is finally being conquered.

[patientx]

LadyDoe:

I read your post, and I can definitely relate.

I'm a little older (39) and I was diagnosed about 1 1/2 years ago. And, sad to say, not a day has gone by since that I haven't thought about MS - whether it's fear about the future, if a mistake I made at work is due to the MS, should I do (insert whatever), or what-have-you. It has really affected my decision making. Recently, I decided I would start taking (engineering) classes again, and I am constantly thinking am I going to be able to do this?

All I can say is don't follow this example. You have two big things going for you - a boyfriend who just proposed and a family who is supportive. These are huge - because it sounds like you will have some help with this. (Also, if look at MS in real general terms, you have some other things going for you - being young at diagnosis, female, and relatively minor onset seem to bode well for the future.)

And, not to put pressure on you, but your training as a neuroscientist puts you in unique position. Maybe you can help do something about this damn disease.

[shye]

LadyDoe,
Welcome to the site!
This is a wonderful site that explores many aspects of MS--and of course right now, with the recent exciting discoveries re: CCSVI, that is explored fully also. I think if you spend some time (actually, a LOT of time-there is very much to cover) looking at the different ways people here have been coping with and treating MS, you will be encouraged, and will gain knowlege in how to treat and get treatment for yourself.

[LadyDoe]

Hey all.
Thank you so much for the encouragement - it has really helped me see the light in all of this. Yes i have read a lot of post here, quite encouraging actually. The negative feelings havent completely subsided yet, as ive developed more symptoms from work related stress from the past 4 days, but i honestly do feel a little better mental wise and my head is clearer. I am also interested in researching the new treatments when they become available.

Dont know what peoples thoughts are, but I was looking into the Swank Diet. Is it really necessary to diet to THAT extreme to see improvements in MS? I mean I would really struggle, but it's slowly becoming an option for me.

I've also decided to register a team to raise money in the MS run & walk event in Melbourne on 6th of June. All in all, i have recruited about 25 people so far, and we will be walking the 5km event.

[chele83]

LadyDoe,

Wow! I see that I am not the only one with those thoughts! I was just recently diagnosed Dec 22nd 2009 and the future pops up in my mind often as well. I will be finished with school next year. I have a wonderful and very supportive husband and supportive family and that matters so much. I understand how you feel completely. I just selected my medicine which I'm alos going on Copaxone. I'm just so anxious to start this medicine to incorporate in my daily routine and then I feel like I could wait also knowing that the first shot would be a lifelong journey and never ending battle of having to take a shot everyday. However I do look on the positive side of it as well we are both still very young and by us starting the medicine early is very good for us and our future. Who knows a cure may come about, who knows YOU may come up with it But I do understand what you feel, its hard not to think about things because we have daily reminders. But I will have to say , that each day its getting a little easier because I'm starting to understand and learn more about it. I also want to do the MS walk!


Michele Holland

[chele83]

Also CONGRATS on the engagement

[MissDee]

I have been on copaxone for close to 5 years, no relapse...knock on wood. I felt very empowered (still do) when I take my shot and am so thankful that there is something for me to take unlike many other diseases. I live as much as I can in the present and try not to think of the future too much as it is changing every second. Good luck!

[valanhb]

Oh wow, where do I start???

I've already been through Rebif and Copaxone. Couldn't tolerate the side effects of Rebif & had an allergic reaction (i.e. couldn't breathe) to Copaxone. I'm in the vast minority on both. I'm on Tysabri now. Not only are the payments almost insurmountable (I'm on the Biogen payment assistance program), but I'm doing very poorly on it as well.

Which leads to the first fear - is there anything that I can take that will work for me??? Will my neurology team (doctor & PA) believe me that this one isn't working too? Just got my 6 month MRI after being on Tysabri - it shows that there are no new lesions. But is that worth how I feel now???

One of my fears has already been realized. I have been involved with a state team that I used to participate in for many years. Although it was time and money that stopped me from doing the sport I love, I was at least able to help with organizing and being the Team Administrator at the National Championships. Last month I had to step down from doing anything. I had from last July to January to make the decision, and I wasn't getting any better. I wasn't able to handle the details last year, and there's no doubt I wouldn't be able to this year. So I had to step down. *sob* Broke my heart to do it, but I can't let the team down and if I stayed on I would let them down.

Next is the fear of being able to keep working, and if I can't then there's the fear of being able to get Disability, and the fear that my husband and I wouldn't be able to stay afloat even if I did.

Yeah, this is a really scary time for me right now!

[L]

I was never afraid of anything. In fact the MS didn't bother me too much at all, right up until a relapse last March when I ended up not being able to walk. I mean, I was pretty close to not being able to walk for quite a while, but this was final..

I was very ill but I am quite creative and keep myself busy writing and making music and stuff so that, although I thought about my illness alot, it didn't get me down at all.

I hate not being able to walk so much though that, in retrospect, if I was to go back and have a fear it would be to end up in a wheelchair. But it's come true.

Until that point I was a happy person, and I considered myself a lucky person too. Now, I'm afraid to say, I'm a very unhappy person and I realise how unlucky I am.

If I were to give myself some advice back when I was first diagnosed I would tell myself to investigate, and take high doses of vitamin D (10,000 iU +) since it has proven to be highly effective in combating the illness. I think, from all I have read, that it might make a huge difference to the course of your illness.

I wish you all the very best of luck though!

PS, it's been nine years since my first symptom and I turned down all therapy. The Best Bet Diet was very popular at the time (perhaps it still is) and its proponents promised that to adhere to it would azure you of no progression and I believed them. I have a needle phobia though, so that may have been the real reason that I refused treatment..

[011201104]

My biggest fear is a combination of the person I love giving up and losing them. I don't get angry alot but I get so angry when I see how this disease affects them. To see someone so diligent at researching different treatments and the willingness to step out there and go for it, and then see them so disappointed. It is heartbreaking. MS is a cruel disease and nobody did anything to deserve it. Alot of people say they dont know what the did to deserve it. The answer is nothing. It happened. Its not fair. But you cant give up. Since we don't know exactly what causes it, you can have the hope of maybe the next treatment will be just what you need. If a treatment doesn't work as you planned, don't give up. MS is always in the grieving process. Take a few days, get yourself together, and start again. I hate MS and I would give anything to eradicate it, or at least find a way to control the symptoms. I don't have any other fears.

[msmything]

I think it's pretty common that upon dx the fear of the wheelchair looms large, but I'm still walking 5 years later, and now I feel like I would trade that for the ability to think, and maybe be able to do some of the things (work related) that I used to do. I've got little memory, and am so fatigued I am busy working my way down the corporate ladder, barely scraping out 20 hours a week so i can be insured. My kids are pretty grwon,(in early 20's,) but not being able to help them is a pain I can't express. I fear homelessness, the state of Il is nearly broke, and housing assistance is hard to come by. if I go the SSDI route I would make more money than I make at work, but I would not be eligible for medicare then for 24 months.
Today is a blue day, I'm usually more upbeat, but this is winning lately as a realize every day takes more and more of ME away from

[L]

I wrote that I was an unhappy person, the other day, but I was having a bad day.. I can still play musical instruments. I haven't problems with my arms, my hands. My cognition is fine. I suppose I ought to be grateful?