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Living With Multiple Sclerosis

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Living With Multiple Sclerosis

I live with this disease everyday.  I am a mother of two and I have a full-time job.  I have created this group so that we can support one another.

Members: 9
Latest Activity: Mar 15, 2012

Discussion Forum

Does the heat bother your MS symptoms? 3 Replies

I was just wondering with the summer months and temps in New England reaching near 100 F if you all are bothered by the heat like I am.  I find myself cooped up in my bedroom which is the only room…Continue

Tags: summer, heat, MS

Started by Robin L Orr. Last reply by Robin L Orr Jul 28, 2011.

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Comment by Christy Seitz on December 8, 2011 at 9:46am

Hi Carla,

She did regain her eyesight after steroid treatments and she has been on betaseron shots for years and sleeping pills, antidepressant and other meds and I am trying to slowly get her focused on more natural way.  I met a lady who had been diagnosed with Ms that hit her hard and fast (Right now I cant think of the name) but they expected her to die she was a nurse who was determined to live she is in great health to this day I have personally met her and on one occasion I brought my sister.  I have learned a lot from her. She prayed when she was healing that there would be something left to prove that she was not misdiagnosed so the only thing left are the lesions on her brain, the myelin grew back.  Which people would say that's impossible well the fact is.. it did! My sister has to come to the point of being the one to take charge and sadly she picks out what the doctor say that she wants to do but the important things with diet which I've never heard the doctor talk about.  She leaves the office with more prescriptions.  I have never been good about prescriptions "a pill for every ill" is not my way"thank the Lord for that".  Well, my almost 3 year old has been very nice to let me respond :)  Have a great day! 

Comment by Carla Clarke on December 7, 2011 at 8:35pm
Hi Christy

Thank you for joining our group, there are some incredible people that have been affected by this disease in one form or another, including myself.

I live in Canada, it seems like every other month there are more people that I come across that know people close to them that have been recently diagnosed with MS. Everyone is affected differently, they have different symptoms as well.

My eyesight was affected about eight years ago as well, but it came back and has been the same since then. My guess is that your sister's will as well, but I strongly suggest that she starts on some MS therapy meds ASAP to prevent her immune system from destroying any more myelin.

As for the 911 situation as horrible as it was to watch, her disease really has nothing to do with what she breathed in. However eating properly and taking extra vitamin D definitely helps too.

I really hope she gets better soon and she will. Tell her to keep her stress level down, and get plenty of rest, she will jump over this hurdle and it sounds like she has great support already!

Keep us posted and God bless you both:)
Comment by Christy Seitz on December 7, 2011 at 7:19pm

Hi Kay-Lynn and Robin my sister has MS she had gone blind in one eye a month after 911 and was later diagnosed.  She was there and breathed in all that stuff and she had been on a birth control called Yazmin for a couple of months.  I often think if that those two things could have played a part.  MS is very close to my heart because of my sister but I have heard a lot about it and have a great interest.  I have great determination to share what I have learned.  Just last night I saw a movie on netflix called "Food Matter"  I would recommend watching it and let me know what you think :) Great Information

Have a great day tomorrow!

Comment by Kay-Lynn Marie Pack on August 7, 2011 at 10:26am

Robin Thank you for your response. I just want you to know don't be sorry it isn't your fault there are things in life that can't be changed it sucks but you learn to live and help those through it. I believe that everything happens for a reason either for us to learn from or someone else. I learned a lot from my mom and would have had it no other way. It made me patient and understanding. I have made friends with others who live with MS because I can understand them and how they talk because of my mom. It helps me with my dear husband who has disablities that others don't understand because they see the outside not the inside. I hope that you will see these things in your children and realize that you may inspire them to do good for others. It is a very rewarding thing that my mom never got to see. 

I myself am going through the process of being tested soon. I really hate admitting that but I have been having problems standing for long periods of time and have been getting dizzy for no reason. I do have other symptoms as well. I am keeping them from my husband right now because that is the last thing I need him to worry about. I just wish that I didn't have to deal with this because I have 3 children under age 5, but that is life I guess and I will live with the outcome be whatever it may be.

Comment by Robin L Orr on July 28, 2011 at 10:05am

Hi Kay-Lynn Marie, I am not sure how to reply to you so forgive me if this is the wrong place, I am still learning the network here.

 

I just wanted to say that I am sorry for what you had to go through with your mom.  I always feel so bad because my kids have to watch the things that I go through and to some degree I do need to depend on them.  My kids are 24, 22 and 14 so they are well aware of everything and all of them do help, physically and emotionally.  I also worry that I will pass along the MS to my children.  I know too that its technically not genetic but I know families where 4 out of 6 of the siblings have it.  That's probably rare but still.  So far, I am the only one in my family with it.  My daughter fits the profile and I worry.  She has low vitamin D, burns in the sun, shares the same posture as me and has the same low thyroid that I have.  I have her and my 14 year old son on extra Vitamin D and a regular vitamin to help.  It's so hard not knowing what causes it.  I can't change where they grew up or their genetic make-up but I can change what they eat and help with vitamins that seem to be common among us.  I worry about getting cancer myself because I have had to do chemotherapy for my MS 3 times which increases my risk of getting cancer and if I do get it then the chemotherapy won't be effective anymore.  It did slow down my MS though and for that I am grateful.

Comment by Kay-Lynn Marie Pack on July 27, 2011 at 1:03pm
I grew up with MS. My mom had it she was awesome she never saw it as a disablity because, she did what she wanted to anyways. It wasn't until about 11 years ago that she showed how vunralable she was, that was when she was diagnosed with cancer. She wanted to fight it and win, I was so on her side for that!! Unfortunatly MS had weaken her body so much that the treatment for the cancer would have killed her. I wish I could have taken it into my body I am healthy at least I would have survived. It was in a spot that could have been operated on, and she would have been fine cause they caught it early, if she didn't have MS. My mom has been gone for 10 years now I really miss her a lot. Like I said she was awesome and her grandkids would have loved her as much as I do. Now we (hubby and I) are worried about me having MS. I know that they say it isn't passed down though the family but it still worries me.
 

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