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Just got diagnosed, can't find a reason

Posted: Thu Oct 28, 2010 10:17 pm
by emg8187
sorry to type a topic so blue
but im 19 years old, had life ahead of me, now ill be lucky to be 50.
don't see the point in dating, school, anything really

im sure some of you had these thoughts when you first got diagnosed
but i really would like to hear how you got through these times

this is terrible, my initial symptom was optic nueritis making my eyes hurt and colors wierd and it seems like i have a lifetime ahead of not being able to function independantly , constant pain, and confusion

so for the love of god
someone please
tell me the point of living

Posted: Fri Oct 29, 2010 8:45 am
by brianm
Calm down and relax.....im 35 now and have had it since my early 20's. I am working full time and have had the exact fear that you are talking about. You are young and have your whole life ahead of you, just take it one day at a time. You will learn to adjust as things happen and you will adapt. Adapting doesnt mean necessarily mobility problems either. Im not in a stinkin wheelchair and if I do end up in one I will adapt and move on. This is a very good website with a lot of knowledge here, read the posts and educate yourself, you need to be your own advocate. Brian

Posted: Fri Oct 29, 2010 8:53 am
by tzootsi
Emg,

The way you are feeling now is quite normal for someone just dx'd with ms. It's a very bitter pill to swallow. I'm the husband of a woman who was dx'd 3 1/2 years ago (she had symptoms for many years before) - yes we were both devastated at first. Here we are 3 1/2 years later - my wife bikes 10 miles a day, works, snowshoes, and we have been to Europe twice since her dx. What I'm trying to say is that ms is NOT a death sentence, and is fairly common, especially among folks living in northern climates.
As others have said, you could go 20 years without many symptoms.
Now for the really good news - medical breakthroughs in the past few years have been coming fast and furious: oral medications, stem cell trials, genetic mapping, and possibly the biggie - CCSVI. If your not familiar with CCSVI - in a nutshell - many doctors are now suspecting that ms can be caused or at least made worse by blockages in the jugular veins. These can easily be opened up by a simple procedure. Lots of people have been helped so far, but it's still brand new and not fully accepted. Stay tuned to the internet to follow this fascinating story.
Chances are, due to medical science MS may become just a minor annoyance within 10 years.
Meanwhile there are lots of things you can on your own do to improve your odds : diet modification, healthy lifestyle, positive attitude. Go to the
direct-ms.org website for tons of very helpful info.
No, your life is not over by a long shot!

Posted: Fri Oct 29, 2010 9:55 pm
by Bender
I'm also newly diagnosed, and I haven't had a chance to get into see a specialist is there an area of the board, or thread, that would lay that stuff out "for dummies" as it were.

Posted: Sat Oct 30, 2010 1:46 pm
by rainer

Posted: Sat Oct 30, 2010 2:03 pm
by scorpion
EMG I can not say it any better than what is posted above. One thing that I was told by my neuro at the time was "there are things a lot worse than MS". Although MS sucks, there ARE a lot worse things(terminal brain tumor, ALS, pancreatic cancer, and the lists goes on and on) that you could have been diagnosed with. I am not sure if you had time to look into the research being done on mS but I truly believe that in the very near future researchers will be able to stop many cases of MS in its tracks. I hope you continue to post on here because it is a truly wonderful place to come for support. Oh yeah, my distant aunt, who was diagnosed with MS at 23, just passed away. She was 75.

[b]I have MS But MS doesnt have me[/b]

Posted: Sun Oct 31, 2010 9:15 pm
by amber
I am sure you have a great network, take little steps, just like you are learning a new subject, I dont have a family history with MS so I really on this site and anything I can get to inform me. Take your time you'll see that there is beauty out there, just look around you, I hate it, but as I have posted before Live Life to the fullest

Posted: Sun Oct 31, 2010 10:31 pm
by ikulo
emg - you have taken a very good, first step in dealing with this disease -- talking with others who are currently living with it. I was diagnosed about 1.5 years ago (I was 27) and the first 3 months I was an emotional train wreck. I spoke with many family friends who have the disease, both through email and in real life. It made me feel better at least hearing from others that they are actually leading normal lives! And I learned taht worrying about what possibly might happen is a waste of time. If you have an open mind, read Jon Kabat-Zinn, who teaches about mindfulness and living in the present.

Also, check out all the great discussions in these forums. Do your own research and start treating your body well with a healthy diet that suits you and also start taking some supplements (vitamin D, to start with).

In most instances this disease can be manageable, so start taking the right steps now!

Good luck with all.