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FORUMS > MS (Multiple Sclerosis)
Replying to Topic: DEALING WITH MS
Created On 1/9/05 12:37 AM by smile


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smile
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1/9/05 12:37 AM
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Anybody out there having close relatives with MS? How do you deal with it? Are you aware of any new treatments available? Any good ideas to make this disease easier?
 
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Aviva
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1/9/05 10:47 AM
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Hi! MS is a really variable disease - it can be totally different depending on your age and the stage you are at, and even on gender. (Twice as many women as men get it, but it can often be more severe for men) At every stage I think there are things a patient can do - there are lots of good medicines, and getting exercise is really important, and there are even more options if you go the alternative medicine route (in addition to standard medicine - I wouldn't recommend doing that instead).
I am in my mid-twenties and was diagnosed with MS three years ago. I am doing very well and would be happy to tell you about what I am doign to manage my MS, medically and emotionally. However, if your relative is significantly older or has been sick for longer it could be a very different situation. Let me know if I can help you!
All the best!
 
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smile
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1/9/05 1:05 PM
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Your condition sounds pretty good, and there is definitely a lot of help out there for you. Just keep going!
My relative is a female, 50 yrs old, and has MS for approx. 15 yrs. now. Her condition is walker/wheelchair, and has been stable for the past 3 yrs now. She's on weekly Avonex injections, which is preventing her MS from getting worst. Over the last # of yrs she has tried many types of alternative medicine, from Shaklee, Herbalife, chelation IV therapy.... She has also tried Steroids, but it was only a temporary cure, and then her symptons would com back worst. What I was wondering, is if you or anyone else would be aware of anything possible to help her get better & feel better. Thanks.
 
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hopingforthebest
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2/13/05 3:08 PM
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I am a male in my mid twenties dealing with ms curious what you can share
 
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pandabear1
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3/10/05 12:46 PM
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I have MS and was diagnosed last year. My neurologist thinks I've probably had it for 10 - 15 years. Mine is the relapsing-remitting and I'm on treatment for it. Copaxone - daily injection - I've noticed a big difference since going on the treatment a year ago. It really helps with the fatigue. I try to eat well - not much red meat, lots of chicken and fish. Lots of vegetables and fresh fuits and whole grains. Try to avoid sugar as much as possible. Exercise such as walking and Pilates and yoga helps too. If you can lift light weights that helps to keep your muscles strong. And get a hobby. Since being sick I've been doing a lot of photography and painting (Chinese brush painting). It helps relieve the stress. Also I take vitamins and flaxseed, evening primrose oil and omega 3 fish oil supplements.
 
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pebbles
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3/15/05 4:18 PM
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Hey! wow to think what sites exist out there that can help people deal with MS. i never really tried any support like this but I figured i would try to see what other people who are frum that have MS deal with. i was diagnosed when i was 17 years old and I am now 19 years old. Thank G-d I am doing amazingly physically but lately emotionally I just have been so out of it. I feel like I dont have anyone to talk to about it that can really understand what I am going through. I know I have the support of my family but basically none of my friends know and thats my decision but I am definately feeling alone. I guess being diagnosed so young can really have an affect on you. i am recently on a break from a very serious relationship...we arent on a break b/c we dont love eachother anymore but his mother has a problem with me having MS i am jsut devesatated. i really dont know what to do to help to try to get things better and for his mom to realize that I will be ok. can anyone help me out there??


Edited: 3/15/05 at 4:27 PM by pebbles
 
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kk
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3/15/05 6:13 PM
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Wow do I relate to you Pebbles. I am now 24, and I was 21 when i was diagnosed (with symptoms since I was 15) and was in a serious relationship while it all happened. Fortunately, my boyfriend (now husband) was amazing and really stood up to his mother. She was in total denial and shock and could not except things all. My boyfriend went through his fair share of thoughts and emotions but ultimately was able to stand up for himself, regardless of his mother's attitude. My only (humble) advice is to talk to him. If he is the right one than it really doesnt matter what his mother thinks, he has to make the ultimate decision about what it means to be with you, regardless of MS or not!!
I also know how hard it is to be faced with a disease like MS and not tell any of your friends. During my initial diagnosis time, I became very introverted and did not talk to any of my friends, because I was just too emotional and could not relate to problems like not getting an A in a class while I was dealing with trying to get what felt like 10,000lb legs to make it across the street! After losing a few friends who couldnt deal with my "rudeness" I learned who was the true thing, and decided to tell one really close true friend and it really helped to have someone who wasnt a family member on my side.
Well, after that whole long shpeil, please feel free to email or post back, I'd be more than happy to listen or help out anyone on this site.
Take care
 
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pebbles
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3/15/05 9:42 PM
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hey kk! thanks for the response! it is very freaky b/c your situation sounds idnetical to mine. how long did you have to go through his mom rejecting you??? its just we had to go through it for so long and my ex just doesnt want to fight his family anymore...he is letting whatever happens happens and i think that for me that hurts the most b/c in a way he is jsut like giving up on me but i know he wont ever give up on me. he is always making sure i am feeling alright and that i am happy, but when it jsut comes to this situation he just has had enough to deal with. i mean we had to go through so much over a period of a year (thats how far back she knew) but i know we belong together and he thinks we will end up together too but i hate not being in control and not being able to fix things. that is one big thing that i hate about with having MS, that i can take medication and control the disease but i have no control in curing it and i am the type of person who likes being in control and knowing i can fix things so everyone can be happy including myself and with MS i feel helpless and i absolutely hate that feeling more than anything. i dont want him to have to fight his family but i would want him to fight for me in a different way. i mean people have told him taht do know about the situation that he is not marrying his parents but he is marrying the person he loves. and he knwos that but i think hes scared to try to approach this and really i dont know how to help in any way. what sort of things did you say to your husband?? is he stubborn b/c i can tell you that mine is very stubborn as much as i am hahahhaa. i truly love him and he means the world to me i jstu want things to be fixed already so we can start our life together.
 
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kk
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3/16/05 10:32 AM
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The best way that worked for me and my husband was to go slow. Any pressures were thrown out the window and we just focused on us. We stopped talking about what life would be like together and just started living life together. We knew that we would find resistence (his uncle told him i would die from MS, thanks that helps alot right??) and i must say i think it was my husband's stubborn nature that saved our relationship. His refusal to let family and friends affect our relationship was out sustaining force. I was definitely insecure and felt "second class", i went from a confident girl who wouldnt settle to a complete doormat. I wish I could tell you that it was something I said or did, but it was the opposite, holding back, giving space (while still keeping in contact) but just letting things chill for a while,not having major emergencies all the time, really worked for us. I do not know every detail of your situation, but I know that sometimes just letting things be for a while can help alot. That's not to say I ever gave up on us, I kept working on our relationship and improving it, but I just let the whole "parents, MS thing" go by the wayside, and let him come to his own conclusions.
I hope some of this helps, keep me posted on what happens!
 
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pebbles
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3/28/05 3:52 PM
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hey kk! so i figured while my ex-boyfriend was in israel this past week and a half he would go to talk his rav from yeshivah, but it turned out he didnt have time to meet with him sine he was busy with other things. i guess he jsut wants to be really passive and jsut let things happen for themselves and whatever happens happens. and that is just killing me. he is jstu accepting that we cant be together right now...but then again its not fair to me b/c its like he is giving up on me and wont do anything about it. i wanna try to do something but im not sure what i can do...i really want to talk to his mother but im not sure what she would say...i mean i am a normal girl so why should she think otherwise i am not different...i mean if anything i am more special b/c i am in love with her son and that i would do anything for him so she should love that. i am just a big mess...i ahve never felt so depressed in my life...and i have heard the saying time heals all wounds...and i have been with other guys in relationships and i ahve gotten over them 1 2 3 but i cant get over him and we have already been apart for 3 months...i knwo we belong together and its killing me we cant. i really need help im falling apart like you cant even imagine.
 
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mike21
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1/10/06 10:53 AM
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hi! i live with someone with ms/relapsing remiting. b'h most of the time you would not be able to tell . fatigue is one of the most common problems.the person is in her 30's.


Edited: 2/19/06 at 3:23 PM by mike21
 
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pebbles
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1/15/06 10:56 PM
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anyone here on rebif?? i was originally on avonex but my neurologist wanted me to change b/c of some activity on my MRI. jsut want to know what its like to take rebif and have to take it 3 times a week.
 
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quitetruly
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1/23/06 9:17 PM
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I've been on REbif since last September. I don't use the auto-injector, but it's not so bad. If you can handle taking it once a week, three times isn't so hard, as long as you remember. I didn't get many injection site reactions, just a black and blue every now and then. If you have any more questions, feel free to write.
 
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freddie
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2/6/06 8:49 PM
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first time on this sight, have had ms for approx. 19 years that i know of. been on avonex and copaxone for 3 years each. got off any drug in july. am trying the alternative route instead. hoping to post this msg & rcv some responses. freddie
 
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pebbles
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2/10/06 4:15 PM
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and what alternative route is that may i ask? and what was wrong with taking the other medications?
 
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freddie
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2/15/06 7:55 AM
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thanx 4 yr response. my alternative therapy is vitamins & nutrition. there are days when i'm pleased with my decision but unfortunately the others still creep in. have used chiroprators and physical therapist. took avonex and copaxone for 3 yrs each. alternative seems to be the wave of the future. in certain ways my body is more alive this way.
give me yr opinion. freddie
 
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pebbles
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2/15/06 10:05 PM
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interestingly enough i am in my third year of college to become a nutritionist so it is interesting to hear that you are using vitamins and nutrition as your alternative. i completely agree with where you are going, but since I am still living with my parents and they dont want to see me have to go through anything or the risk of anything I am on medication. on top of the medication i use your alternative route by watching the way i eat and taking a multi vitamin. if you dont mind me asking in what ways nutritionally have you changed your diet?
 
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mike21
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2/16/06 1:19 PM
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I understand what you are going through. I am in my thirties now. diagnosed abt. 10 yrs ago. was right in the middle of a serious relationship when diag. ppl. get very scared. I went through a number of very difficult situations, bec. of ppl. being scared. B"H after about 5 years of rollercoastering, I met the right one, and they will accept you for who you are. It's definately tough though, and I definitely have my ups and downs. Stay strong!!!!! It's so hard.
 
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mike21
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2/16/06 1:30 PM
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Someone has been making me crazy about trying shaklee products to treat ms. They think it will heal me completely, just bec. they heard some advertisement about it. I think it's just another brand of vitamins like all the other co.s out there trying to make $. Has anyone heard about this, or had any experience with this?????????????? Please respond!!!!!!!!
 
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freddie
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2/17/06 8:10 AM
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glad to hear that u r studying to be a nutritionist. that gives us hope, unlike the medical field.
try the web site:www.heal-multiplesclerosis.info
give me your opinion. git shabbos,freddie
 
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