Trying to cope

A forum to talk about the general challenges of daily life with MS.
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jkang
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Joined: Fri Oct 02, 2015 9:49 am

Trying to cope

Post by jkang » Mon Jan 09, 2017 12:10 am

Hi everyone,

I was diagnosed with ms almost exactly a year ago at the age of 25. And there have been many changes within this year. I think the diagnosis was actually a relief to me because I felt like I actually had an answer for what has been going on with me and I could now more forward and start treatment.

However, shortly after the diagnosis I began having severe electrical shocks all throughout my body. I was put on 1000 mg of IV prednisone for 3 days. During this time I also developed optic neuritis as well as several other issues. Luckily I started taking copaxone within the next few days (on my birthday).

Then a few months past and everything was going as well as could be expected. I ended up getting engaged to the most supportive man I could have hoped for. But 2 days after our engagement party I ended up in emergency due to the electrics shocks again, this time to have 1000 mg of IV prednisone for 5 days. MRIs showed a new brain lesion that took up a quarter of my brains size.

I know that I'm quite lucky that the ms doesn't affect me as much as it could. The only thing that I really have to worry about is sever fatigue and pain occasionally. But I think all the ms related issues, the stress of planning a wedding, and the changes that may come are all really getting to me.

I don't feel like my old self anymore. I'm constantly tired. To the point where I'm in tears cause I don't even have energy to get out of bed. Ive gained about 30 lbs due to the prednisone, a large decrease in physical activity, and a poor diet. I just don't think I'm the fun person I use to be. I feel like I'm struggling and losing hope. I cry constantly over the stupidest things and I feel like it's unfair to my fiancé.

I guess I just want to know if it gets better.

(I was trying to keep this short hahaha)

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jimmylegs
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Joined: Sat Mar 11, 2006 3:00 pm

Re: Trying to cope

Post by jimmylegs » Tue Jan 10, 2017 1:16 pm

hi :) if you are willing to put in some effort, at a minimum there should be some ways to improve diet and lifestyle, with possible benefits to your overall condition as a result. it's a learning curve, but worth it. easy starting point: write up all food fluids supplements and meds you would have taken over the last three days. you mentioned poor diet, a good record would point up any specific issues including probable overlap with deficits common in ms patients. i've worked through this approach before, with a personal friend and she even had some bloodwork done to help confirm what was showing up in the review of her diet. we worked out a new diet plan for her and all her issues cleared up. she was not an ms patient, but she had some quite debilitating problems and everything cleared up once she got into a new routine.
if you were to get a referral to a nutritionist they may ask for something similar, three day diet diary. two days out of the house, one at home. to approximate standard work week and weekend.
info to consider: http://drugs.wellitude.com/2012/02/05/prednisone/
chin up :D you have some control here!!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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