newly diagnosed, scared, looking for hope

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newly diagnosed, scared, looking for hope

Postby hlm286 » Sun Jun 28, 2009 6:33 pm

Hi everyone.
I was just diagnosed with MS. I'm 24, married, and have a 16 month old daughter. My entire torso pretty much and left arm are stone numb. I finished 3 days of IV steroids on friday but am on no other meds. I'm still in shock from the whole situation and am praying for the feeling to come back in my body so that I can feel again, and go back to work, care for my daughter, etc... I guess I'm looking for others who have had this numbness and it went away for hope that mine will too. Can anyone give me some ray of hope? I'm trying to be optimistic but I'm also so scared...
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Postby Terry » Sun Jun 28, 2009 8:06 pm

I had the numbness and it was horrible. I am sorry you are having to deal with that. I had it from my toes to my torso- although a bit higher on one side. I couldn't feel anything. That was in the spring of 2006. The only lasting part of that for me is that my toes are still "numbish". Not numb, but numbish. Three plus years later- haven't had to deal with it again. Hang in there. Fingers crossed for yours to go away too.
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Postby hlm286 » Mon Jun 29, 2009 5:41 am

Thank you so much for responding! Your response brought me to tears because it gives me hope. I'm so scared right now though I'm trying not to be. I just want to be able to lead a somewhat "normal" life again, playing with my little girl, going back to work, etc. I know I need to have more patience. Do you remember how long about it took for your numbness to subside? I'm left handed and my left arm/hand is very numb so things are alot more challenging. I've also had difficulty urinating and the anxiety over it doesn't help. I'm trying to stay calm and relaxed but it is challenging. I just also want to hear of others who lead "normal" lives, whatever that is for us now. Hearing these stories brings me hope. Thank you!
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Postby fishee2 » Mon Jun 29, 2009 8:24 am

Hi Again, thought I should chime in again for you. I live a completely normal life, some 5 or 6 years after being diagnosed. If I didn't tell you I had MS you would never know. I have been on the drug Rebif for a few years now and it has worked very well, no attacks since starting the treatment. My only symptom that I deal with day to day is fatigue. I went through all of college with it, and now hold a full time job, married with a kid on the way. My life couldn't really be any more "normal" if I tried. So just keep faith that leading a normal life is completely possible with MS, and we are closer now then ever to solving this puzzle that is MS. I know how hard it can be to see any light at the end of the tunnel, but keep your hopes up!
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Postby LoveActually » Mon Jun 29, 2009 8:28 am

A few days back I was reading a thread on here about people who experienced numbness and spent days in the hospital receiving IV steroids like you described. I can't find the thread for the life of me but I'll keep looking for you.

The reason I want you to see it is because everyone went through it and pretty much everyone, got over it. Each persons timeline was different. Some people felt better soon after receiving the steriods and some took 30 days or more to feel the benefits of it.

Wishing you relief very very soon. And if anyone else know's what thread I'm talking about, can you please share the link with hlm286
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Postby daverestonvirginia » Tue Jun 30, 2009 2:45 am

If you are looking for hope you have come to the right place. I have found this to be a great site, a place to ask questions and offer help to others, a site filled with very positive people, but not unrealistic. I have heard it said there are really only two driving emotions in life, love and fear. We all make the choice every day, do we want to live in fear or love. Choose love, I know I have.
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Postby hlm286 » Tue Jun 30, 2009 7:41 am

Thank you all so much for your heartfelt responses. I have felt better since the steroids (am able to urinate on my own again, although sometimes it takes much concentration, I am walking without any aids, however I'm still very numb in my torso and left arm/hand) Mostly its the numbness that I'm worried about and am praying to make a full recovery so that I can function normally (driving, working, using my left hand because I'm left handed, etc.) I sometimes can't tell if I am feeling better or if I'm just learning to better function and feeling happier so that affects it too positively. It is such a relief though to hear people say that it took a little while to get better, as strange as that may sound, it's just sometimes I fear that if I'm not better already, it might not work, but I'm trying not to think that way and be optimistic, and listen to all of your advice, and I am so grateful to have found this site for support! It has only been a week since I was hospitalized so I'm trying to have patience and hopfully get better each day. IO do wonder though what is best to heal quickly - resting a lot or trying to go on with your day to day activities? Its a little hard for me to rest alot with a toddler on the go, but I do have family support and try to take it easy, I just don't want to push too hard and slow down my recovery, do you think thats possible? I want to do whats best...
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Postby daverestonvirginia » Wed Jul 01, 2009 1:00 am

I know you have a lot of questions; I was the same way when I was first dx. I guess it is a good news bad news thing, bad news you have ms, good news things usually happen pretty slowly with ms. So you can take some time to just let things settle in, also depending on how you look at it anything can happen with your ms, you could end up having very mild or no additional symptoms, no-one can say for sure. I would take some time; do some reading on this site and others if you want. No need to make quick choices as to which meds you want to go on or which alternate treatments you may want to try (I take, copaxone, am on the Best Bet Diet, and do supplements, mainly fish oil and vitamin d). Listen to your body, if you are tired try and get some rest, I would get your vitamin d level checked at some point, again no rush. Being told you have ms is like a kick in the teeth, look to friends and family for support. Again, the good news is anything can happen with ms; I am over three years after my dx and have no symptoms at all.
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