Really Lost right now and going blind from my MS!!

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Lost and Lost
New Member


Date Joined Oct 2009
Total Posts : 19
   Posted Yesterday 2:54 PM (GMT -6)   
I am just lost how else can I say it. I am 28 years old and I have been diagnosed for 4 years now. I always have optic neuitis (can't spell) and now it is making it hard for me to drive safely. I hate relying on others and my husband just doesn't get it. I am so angry right now and I can't look at my MS and say ( I HATE YOU ) so I just cry. I got on line in hopes to find others going through the same thing. Not wishing it on anyone but I know its out there so someone has to understand and let me vent. So here I am venting, crying, wanting to yell and instead typing away I am. Thank you for who ever is reading this for taking the time. God bless and well that's my story. I HATE MS!!!!


Lost and Lost

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted Today 10:29 AM (GMT -6)   
Hey Lost,
 
I am sorry you are having such a rough time.  Is there any chance of a run of solumedrol?  I have heard that works on that optic neuritis real well.  I do hope your vision is just a temporary setback.  That is very common.  Of course, people with MS can lose their vision.  Let's hope that is not happening with you at least on a permanent basis. 
 
Please know we are here for you and you are very welcome here.  Please let us know how you are doing.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted Today 2:12 PM (GMT -6)   
Lost and Lost,
 
I am sorry you are having such a hard time.  I know I get very discouraged during flares- when I can barely walk across a room and the optic neuritis screws up my vision. 
 
Just remember that not every day will be a bad one.  Try to hang on for those good days, and in the meantime enjoy what you can: go outside and breathe the fresh air, sit quietly and listen to some uplifting music, cuddle one of your kids on your lap, or spend some time in conversation with your husband about something that doesn't involve MS.  MS will change your life, but it doesn't have to ruin your life.
 
I know it's hard, but the good news is that you are not alone.  There are plenty of people right here who understand exactly what you are going through.


Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).

http://diannaschnabel.blogspot.com/


Lost and Lost
New Member


Date Joined Oct 2009
Total Posts : 19
   Posted Today 8:24 PM (GMT -6)   
Thank you both for your kind words. Yes I do the IV solumedrol just did a three day round 2 weeks ago and it didn't help so I have another 3 days this week. It makes me feel so yuck and I can't take any down time. So I ask everyone to just keep me in their prayers. Thank you so much and I will be back on here I am so glad to find others that can relate.


Lost and Lost

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted Today 9:17 PM (GMT -6)   
Yeah I am with you on that solumedrol.  I don't love it.  Ick.  You are in my prayers.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Lost and Lost
New Member


Date Joined Oct 2009
Total Posts : 19
   Posted Today 10:50 PM (GMT -6)   
Thank you Gretchen for your kind words. God bless!

Lost and Lost

dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 10/19/2009 7:38 PM (GMT -6)   
Lost and Lost,
 
I will pray that your next run of solumedrol is effective so you can get some relief.  I hope you have some people that can help out a little so you can get some rest during the treatment.  I had to do that treatment for five days straight last time, and the only thing I could do afterwards was collapse into my bed for the afternoon.

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).

http://diannaschnabel.blogspot.com/


Lost and Lost
New Member


Date Joined Oct 2009
Total Posts : 19
   Posted 10/22/2009 3:28 PM (GMT -6)   
well I just finished my second run of three straight days of the solumedrol so now its a waiting game. Very tired I run from work to treatment to school and then to bed so I am totally done. Thank heavens the weekend is almost here. I am hoping to get my vision back soon. God will help me I have faith. Thank you all for taking the time to be so supportive. God bless you all.


Lost and Lost

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 10/22/2009 6:04 PM (GMT -6)   
Wow lost!
 
You are amazing!  You need to rest!  Please stop and rest.  I was home from work three weeks the last time I flared.  I did the solumedrol for five days straight, I can't imagine working! 
 
Now ....I am ordering you!  Go rest!
 
Seriously, I do hope you feel better real soon.  Vision and eye stuff is so scary.  Please keep us posted.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Donatella27
New Member


Date Joined Oct 2009
Total Posts : 12
   Posted 10/24/2009 8:45 PM (GMT -6)   
Hey girl you definitley need some relaxing time, your body is under enough stress with the Optic Neuritis and trying to heal, you need as much sleep and rest as possible.  I realies that sometimes this may be financially impossible, but its times like these you need to call on friends and family for support.
 
I've only had one bout of Optic Neuritis and was so depressed and used every opportunity to rest and sleep and get better.  You WILL get better, you need to believe in it, and give your body some opportunity to heal, pleast dont overdo yourself x
 
 

Lost and Lost
New Member


Date Joined Oct 2009
Total Posts : 19
   Posted 10/25/2009 3:45 PM (GMT -6)   
I know I need to rest but its finding the time that I can't seem to do. I am so far not getting my vision back but still hopeful. I am truly grateful for finding you guys for support. Thank you it means so much to me to get on here and see someone cares. My Dr wants me to consider a power port so I can do treatments more often and easier cuz my viens are not cooperating anymore so now that is in thought too. Well not much to report just same as always really tired and really busy. I hope you all are doing ok to I have been so selfish and not asked how you are all doing I am sorry for that. Thank you again for your kindness and heart felt posts. I will continue on here as well. Hope next time I can see with both eyes and if not soon enough I guess. All in its time right.

God Bless,

Lost and Lost

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 10/25/2009 6:17 PM (GMT -6)   
No worries, Lost.  You are very welcome here.  We are so glad you are.  Just feel better soon.  There is all kinds of time for getting acquainted. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Donatella27
New Member


Date Joined Oct 2009
Total Posts : 12
   Posted 10/26/2009 5:00 AM (GMT -6)   
the best thing for hope is hearing other people who suffered optic neuritis and came good again.
 
i remember last year during my time, i met a young man who was next to me in the day treatment unit and receiving the same IV steriods as i was for optic neuritis.  for me who'd never heard of it, or know if i would see again, it was so good to talk to him, as he'd suffered them many times over and always regained his sight.
 
you will regain sight and your body is fighting as hard as it can, the port sounds like a great idea, maybe some easier and direct access will have a better effect for you.  i know it took me over 2 weeks to notice any improvement in my sight, so hang in there, it will come back!!!

Lost and Lost
New Member


Date Joined Oct 2009
Total Posts : 19
   Posted 11/1/2009 2:57 PM (GMT -6)   
Hi this is Lost and I want to give an update so far a little improvement not much but I will take it. Gretchen I don't know how to get in contact with you other than here so hope you let us know how you are doing too. I hope everyone is up beat today and enjoying life. God is good and makes us strong even when we think we are weak. Hello to everyone who is on here and all who I have replied back and fourth with. Hope to log in after while and hear from all of you.
God Bless!!

Lost and Lost

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 11/1/2009 5:58 PM (GMT -6)   
Hey lost,
 
If you click on my name in the side bar, you will see my email address.  You may always email me.  By putting it there, it is available only to members of this site.  Leaves me a bit safer from spam ;)  I am doing a little better as well.  I am feeilng much better over-all.  I am going back to work on Tuesday with any luck.  I need to work!  I helps me so much. 
 
Feel free to email me if you would like.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 11/1/2009 10:05 PM (GMT -6)   
Glad to hear you are both feeling a little better.  Thanks for the reminder about God's strength in our weakness Lost...you make a good point. :)

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).

http://diannaschnabel.blogspot.com/


Lost and Lost
New Member


Date Joined Oct 2009
Total Posts : 19
   Posted 11/5/2009 9:48 PM (GMT -6)   
Well here I go again back to the Dr. cuz I am going blind. I think I am going to talk to him about coming off all meds and treatments and just being done. I want to give my body a chance to fight on its own. Maybe that's what I really need. Anyone have any advice to offer please do.

God Bless and give us strength!!

Lost and Lost ( hope to be found soon LOL )

sandfly
Regular Member


Date Joined Sep 2009
Total Posts : 27
   Posted 11/6/2009 7:45 PM (GMT -6)   
I'm not on any meds for my ms, I'm just not a candidate for anything with all my other health issues. But I can relate to your vision problems as I'm slowly losing my eyesight too. My great passion is painting and sketching so I know this will soon be over for me. My biggest fear is how to fill my days when you can only see shadows? So far all my dr. can do is try to control the pain I have and this isn't always possible but at least for now I can lose myself in my sketching and painting, when htat's gone I don't know what I'll do.

sandfly
Regular Member


Date Joined Sep 2009
Total Posts : 27
   Posted 11/6/2009 7:46 PM (GMT -6)   
I'm not on any meds for my ms, I'm just not a candidate for anything with all my other health issues. But I can relate to your vision problems as I'm slowly losing my eyesight too. My great passion is painting and sketching so I know this will soon be over for me. My biggest fear is how to fill my days when you can only see shadows? So far all my dr. can do is try to control the pain I have and this isn't always possible but at least for now I can lose myself in my sketching and painting, when htat's gone I don't know what I'll do.

Lost and Lost
New Member


Date Joined Oct 2009
Total Posts : 19
   Posted 11/10/2009 7:57 PM (GMT -6)   
I have started Plasma Pheresis ( spelling is not my strong suit) and the surgery to put in the cath. in my neck and chest SUCKED!! I am so uncomfortable all I can hope is it works. My first round was hard and going for round two in the morning hoping it gets better from here. It is a 50/50 chance to put me in remission so I will try it. I am so tired right now and feel so helpless it isn't even funny. God Bless my family and friends and my husband has so stepped up to the plate. I will so pray for all of you suffering. I know how much it sucks. God bless you and your families and I will be back to post soon.

God only gives us what we can handle and yes sometimes he KNOWS we can handle more than we think we can but only with him at our side.
God Bless....

Lost and Lost ( hopefully soon to be found hahahaha funny I know) God Bless!!

Lost and Lost
New Member


Date Joined Oct 2009
Total Posts : 19
   Posted 12/1/2009 8:50 PM (GMT -6)   
Ok update the pherisis worked so far so good. Thinking of you all and wondering how everyone is doing. I hope to check here and see you all are doing good. For now thats all I have not much but an update. Thank you all for your support and I hope to return the favor.


Lost and Lost

Lost and Lost
New Member


Date Joined Oct 2009
Total Posts : 19
   Posted 1/5/2011 8:25 PM (GMT -6)   
Its me LOST how is everyone doing hope good. I went 36 weeks on pheresis symptom free and now I am in a terrible flare like never before. Need help to vent anyone avalible??

Kaitlin
New Member


Date Joined Mar 2011
Total Posts : 6
   Posted 3/1/2011 1:25 AM (GMT -6)   
I was diagnosed 18 days ago, and my flair is slowing down and i took my last steriod yesterday so i am waiting for my face to stop being so huge! (I am 20 and you are the closest one to my age i've found so far) I was wondering what is pheresis?

Clover50
New Member


Date Joined Mar 2011
Total Posts : 3
   Posted 3/4/2011 3:47 PM (GMT -6)   
Hi, please don't cry; you should call your neurologist; I have MS and have low vision, but when I was at the MS Center, I met someone like you; she got a special operation on her eyes for her MS condition and could see again.  I don't know how many eye conditions there are, but I'm sure your neurologist can help you.  Are you taking any ABC drugs?  God bless...Clover1
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