Multiple Sclerosis

killerqueen21 · February 2015

Hi everyone...My sister just recently got diagnosed with MS. She didn't react when she was first told in the hospital, but now she is having a delayed response and is in full fledged freak-out mode. My sister and I are very close. I hate that she's going through this, but I intend to be there to help her with anything she needs. For those of you who have MS, or knows someone who does, what do you experience? She is afraid her life is over, but I know better than that. The doctor found one lesion on her brain, and he said he did not think the disease would be very active; that said, we know the disease can be unpredictable. Anyone with the progressive type? Anyone at all that has experience with this disease, would love to hear your experience. I would like to know the best way to support her.

Thanks all.

Enf3ktid · February 2015

My wife was diagnosed in 2007. She just turned the big 3-0 this year. For the most part she is fine. Over the past 8 years she has only had one issue that we had to seek a doctor for. Her leg was not working correctly, and had to have a steroid treatment for a week. Then it went into remission. She used to take a daily injection to manage her MS but thanks to advances in medications she only has to take 3 injections a week now. At first we were very stressed and worried and sad and confused. But as the years have passed its become just something we live with in the back of our minds. We decided, since the doctors said (with medications) we should have a pretty long run without complications, then we will enjoy life now and worry when it's a problem. I know she doesn't always tell me every bad thought or feeling she has with it, and I don't think I could understand it on her level. But I try to remind her that whatever challenges we have had in life before we have overcome them and we will just do the same with this. As for advise I would say don't believe every opinion or life change suggestion you read online. There are a ton of quacks out there telling you to eat this and avoid that. If she is curious about one have her ask her doctor. I think I read somewhere a couple years ago someone suggested a chemical in bee stings may do something positive. I hope no one ran to the nearest hive and kicked it in hopes of a cure. Be supportive in the struggles she has but do not be an enabler to self pity. Like I said so far we are on a eight year kick without any real changes in how we live our life. I hope the best for your sister and you as well.

mygrl4meee · February 2015

My brother was diagnosed at 18 years of age. His progressed pretty fast. He is in his early 30s and has mobility problems with his legs. He has to use a walker and has for a few years now.

killerqueen21 · February 2015

Enf3ktid wrote: »

My wife was diagnosed in 2007. She just turned the big 3-0 this year. For the most part she is fine. Over the past 8 years she has only had one issue that we had to seek a doctor for. Her leg was not working correctly, and had to have a steroid treatment for a week. Then it went into remission. She used to take a daily injection to manage her MS but thanks to advances in medications she only has to take 3 injections a week now. At first we were very stressed and worried and sad and confused. But as the years have passed its become just something we live with in the back of our minds. We decided, since the doctors said (with medications) we should have a pretty long run without complications, then we will enjoy life now and worry when it's a problem. I know she doesn't always tell me every bad thought or feeling she has with it, and I don't think I could understand it on her level. But I try to remind her that whatever challenges we have had in life before we have overcome them and we will just do the same with this. As for advise I would say don't believe every opinion or life change suggestion you read online. There are a ton of quacks out there telling you to eat this and avoid that. If she is curious about one have her ask her doctor. I think I read somewhere a couple years ago someone suggested a chemical in bee stings may do something positive. I hope no one ran to the nearest hive and kicked it in hopes of a cure. Be supportive in the struggles she has but do not be an enabler to self pity. Like I said so far we are on a eight year kick without any real changes in how we live our life. I hope the best for your sister and you as well.

Thank you, that's comforting. I have read some of the stuff online about specific diets and I tend to think that stuff is bologna. I'm happy to hear your wife is doing well, I hope she continues to do well.

@mygrl4meee‌ I am sorry to hear that. One of my friends has a friend who was diagnosed at 17, is 30ish, and he has progressed quickly too. I've heard that it is worse in men, for whatever reason. I know it can affect everyone differently. Ugh

ILiftHeavyAcrylics · February 2015

I don't have MS, although it was suspected for awhile. I do have some experience with chronic illness diagnoses. It's important for your sister to have her freak out. Until the freak out you're not really dealing with the news.

The best way to support someone with chronic illness is to ask what they need and then respect whatever they tell you. Don't assume you need to do everything for her. If you want to help with something specific, ask if she wants help. If she says no don't push it.

Keep inviting her to do things even if you don't think she can or will want to/feel up to it. When the invitations stop because you keep having to say no, you notice.

Mostly just be available. Listen to what she tells you. The fact that you're here asking means you're already two steps ahead.

MissAK12 · February 2015

My Mom was diagnosed with MS in 1947 at the age of 23 and battled with it for over 60 years; she passed way of an unrelated illness in 2012. Over the years she was on canes, then spent 18 months on the Stryker bed, after which she was paralyzed for the rest of her life. Whenever she would meet someone who was battling MS she would tell them to not give up. Mom believed a large part of the reason she was able to live so long with MS was because of her outlook. She was a teacher, an artist, an author, ran her own business, and raised six kids. One thing that she always did was move every day, whether it was wheeling her chair, knitting or gardening; some days it was more than others.

Over the years we found the best way to support Mom was to come to know her triggers (heat, extreme cold, and rapid weather changes were really bad), and how to deal with them. She often found going for drives would help with the pain, especially with heated seats.

I'm sorry that your sister is having to fight this, but there are lots of new treatments being developed and some day, hopefully, the cause will be found so that a cure can be found.

I wish you and your sister the best.

killerqueen21 · February 2015

Thank you @ILiftHeavyAcrylics‌. I'm trying very hard to leave her alone, but at the same time check on her to make sure she's ok.

She didn't react when we were at the hospital and I worried then. I thought maybe she was being really strong with it; but the more I thought, the more I realized she probably just wasn't processing it, she was still really sick. I just want to make sure I am handling it right. I love her very much and I will do what I can to be there for her.

I have 2 chronic illnessses myself. I've been sick since I was born. I just deal with it. It seems like nothing to me. But she's not use to having health problems, so this all just really threw us for a loop. I'm trying to stay strong for her, even though I do admit, I worry about her. She's dealt a lot with depression in the past, and I don't want this to throw her back into it. It is hard enough to get out.

killerqueen21 · February 2015

@MissAK12‌ thank you for your words. Your mother sounds like she was tough as nails

malone099 · February 2015

All these stories r so empowering.
I was like your sister too. Strong in the beginning, but then went into a huge depression. My doctors put me on more & more pain meds & I gained a total of 55 lbs putting me in a deeper depression. Diet & exercise r key; this is what got me off most of my meds too. Check out this link. Its a bit long but worth it;

http://youtu.be/KLjgBLwH3Wc
Best of luck with your sister. Time usually heals all wounds & she's lucky to have such a loving supportive sister!

ilovemypeekapug · February 2015

I was diagnosed in 2009 at the age of 32. I went to the hospital thinking I was having a stroke because of my left sided weakness. I had only one lesion,too. I was given IV steroids and then oral steroids and started quickly on a disease modifying drug called Rebif. After I recovered from that initial attack, I have not had any more relapses! As of my last MRI, no new lesions. It is very unpredictable, so you can't worry about what's going to happen down the road. I went into full freak out mode in the hospital when I got diagnosed. Over the first few weeks I dealt with severe depression and suicidal thoughts. But...I had a huge outpouring if love and suppory from family and friends. As of today, you wouldn't know that I have MS if I didn't tell you. I have the annoying symptoms if numbness in ky feet abd hands and the occasional ms " hug", but the killer is the. fatigue!! I work as a nurse o. My feet all day, so when I get home I pretty much just rest all evening to recover. There is hope! MS is not a death sentence. New drugs are coming out all the time! Feel free to friend me if you want or have questions. Best of luck!

OhiosFinest · March 2015

Christmas Morning 2013 I woke up completely numb from the belly-button down.
They found two incredibly small lesions on my MRI that did not look "active" with contrast. I also had a spinal tap and had very little elevation in the proteins they search or.

Technically I am diagnosed with "CIS" which means clinically isolated symptom, or basically the first attack (because you have to have two or a lot of lesions with one attack to be clinically diagnosed with MS)

I thought my life was over the day they told me. I made plans to quit my job and break up with my gf. Long story short, its 2015, I haven't had any other attacks or other symptoms. A few weeks after my original symptoms I am completely healed. I do take Copaxone though. I am also now married and found out I am having a kid

Life is scary, MS is scary, but I promise life will start to become normal (as normal as possible) as you keep going.

If you would like to talk, feel free to PM me.

Ginaaa71 · March 2015

My sister was diagnosed over 10 years ago. My aunt passed away from MS related complications and died around 70 after 15 years in a wheel chair. My sister has good and bad days, has tried all 3 meds without much luck. But she doesn't do her best to avoid trigger: stress, heat, sleep deprivation and diet. I know how you feel as a sister, it's so sad and you feel so bad for them. Please urge her to go to counseling and offer to go with. She needs someone to talk to. She needs to remember everyone progresses differently, and get a second opinion. Meds can slow the disease down. Wishing you and her the best.

LauraBee121 · March 2015

I had symptoms of MS since 2007 but only recently got my diagnosis, it was ruled out in the early days because only had one lesion. I know it sounds crazy but when I finally did get the diagnosis it was a huge relief, I had a name for all the problems, people would stop thinking I was making stuff up etc etc...
I did however slip into depression not long after the initial relief, I needed to grieve and get my head around things. It didn't help that a so called friend/colleague disclosed to my work which caused problems. I put on 2 stone because I saw no point in keeping healthy with food and exercise. In may last year I saw a photo of me and almost burst into tears, it was the kick up the butt I needed to get my life back. I started exercising again and focused on clean eating. I had lost 21lbs at my 3 month and now total of 29lbs.
As for the MS it has been up and down over the years, I have RRMS and experience long bouts of remission where I function really well, working full time then gymming every day. Occasionally my body gives up and I end up unable to do even normal everyday stuff like keeping my home spotless. I have just had a relapse (think coming out of it now) and have not been able to work or exercise but with RRMS you know you're going to have the ups and downs and this gives you hope and makes the downs much more bearable. I know I must be coming out of it because I am desperate to get back in the gym... Good luck to your sister, let her know that it is not the end of her life and maybe she will adapt and like her new life.. I know I sure do. In fact I'm one of the fittest person in my workplace regardless of the diagnosis.

Ticklemynose · March 2015

killerqueen21 - sorry to hear about it. I don't have MS but I do have a chronic illness and identify with the depression that so many people go through.

Thank you to everyone for sharing. I would love some support now that I am getting back to exercising and eating well. I would love to support you as well!

sheldonklein · March 2015

My wife was diagnosed about 15 years ago. By coincidence, a good friend was diagnosed at the exact same time. My wife has had virtually no problems and has been off drugs for several years. The friend has been in a wheelchair for a decade. There are more people like my wife than friend, but it's all very unpredictable.

FluffySandwich · March 2015

My father had multiple sclerosis. I think he was diagnosed when he was 25 and died last year. I don't mean to freak you out, though, because he had a specific kind of MS that was especially cruel and he could not move much at all by the time of his death. He had many friends who had MS, and they were still able to exercise and go about their normal activities fine for the most part. These people have also had MS for many, MANY years and still consider themselves healthy, only that it's an annoyance they have to deal with. One thing to note here is that medical technology has definitely improved since my father was diagnosed, and I believe that is a lot easier to seek help for this condition.

jazzine1 · March 2015

My daughter's father was diagnosed in Jan 2010 and we had our daughter in Oct 2010. He was hospitalized because his whole left side became numb. We didn't know what was happening then he had the MRI, Cat Scan and spinal tap done and clear as day he a couple white specks(lesions) on his scan. Since then he has had 3 other sporadic episodes of one side of the body getting numb and each time he is rushed to the hospital. The last time he actually fell down a flight of stairs because his left side including his leg became numb.

When he first got diagnosed I went online and researched and read up on everything I could find out on MS and gave him copies of articles. We have been broken up going on 3yrs now but I still get very concerned for him and his MS. I cannot imagine my daughter not having her father around or him being in a wheelchair. I get very concerned because I personally don't think he takes his diagnosis seriously or maybe just doesn't understand it because once he gets out of the hospital and is in remission he stops taking all his meds including the Avonnex weekly shots and doesn't make it a point to see his neurologist.

IMO I don't feel someone's life has to be over because they have MS. Especially if they can still do what they have been doing. My daughters father works full time, goes paint balling on the weekends, plays sports and lives a regular active life. The only time we are reminded that he has MS is when he gets those episodes and has to be hospitalized for about a week or so and put on meds like steroids to bring down the inflammations. I have read MS is progressive so it can get worst over time but that's why it's so important to take the meds which are believed to delay it.
Good luck!

LauraBee121 · March 2015

jazzine1 wrote: »

My daughter's father was diagnosed in Jan 2010 and we had our daughter in Oct 2010. He was hospitalized because his whole left side became numb. We didn't know what was happening then he had the MRI, Cat Scan and spinal tap done and clear as day he a couple white specks(lesions) on his scan. Since then he has had 3 other sporadic episodes of one side of the body getting numb and each time he is rushed to the hospital. The last time he actually fell down a flight of stairs because his left side including his leg became numb.

When he first got diagnosed I went online and researched and read up on everything I could find out on MS and gave him copies of articles. We have been broken up going on 3yrs now but I still get very concerned for him and his MS. I cannot imagine my daughter not having her father around or him being in a wheelchair. I get very concerned because I personally don't think he takes his diagnosis seriously or maybe just doesn't understand it because once he gets out of the hospital and is in remission he stops taking all his meds including the Avonnex weekly shots and doesn't make it a point to see his neurologist.

IMO I don't feel someone's life has to be over because they have MS. Especially if they can still do what they have been doing. My daughters father works full time, goes paint balling on the weekends, plays sports and lives a regular active life. The only time we are reminded that he has MS is when he gets those episodes and has to be hospitalized for about a week or so and put on meds like steroids to bring down the inflammations. I have read MS is progressive so it can get worst over time but that's why it's so important to take the meds which are believed to delay it.
Good luck!

Not all MS is progressive, my neuro said that some people go through their whole lives not even knowing they had it but it shows up in tests after death. I also live my life like I have not got ms when not in a relapse, I eat healthily and exercise but do everything and more than my firends.!

jazzine1 · March 2015

LauraBee121 wrote: »

Not all MS is progressive, my neuro said that some people go through their whole lives not even knowing they had it but it shows up in tests after death. I also live my life like I have not got ms when not in a relapse, I eat healthily and exercise but do everything and more than my firends.!

Thats good news then. If that is true, then I hope my daughter's fathers MS isnt progressive. The times I had gone with him his nuero has never mentioned to him not all MS isnt progressive. I will have to go back and read up on it.

killerqueen21 · May 2015

Sorry I'm late to this; but the post about not all MS being progressive is true. For some it just shows up and then disappears. She has relapse remitting. She has had a couple of issues since then, but nothing too serious thankfully. We're hoping it stays that way for a while.

sexygatubela77 · February 2016

killerqueen21 wrote: »

Thank you @ILiftHeavyAcrylics‌. I'm trying very hard to leave her alone, but at the same time check on her to make sure she's ok.

She didn't react when we were at the hospital and I worried then. I thought maybe she was being really strong with it; but the more I thought, the more I realized she probably just wasn't processing it, she was still really sick. I just want to make sure I am handling it right. I love her very much and I will do what I can to be there for her.

I have 2 chronic illnessses myself. I've been sick since I was born. I just deal with it. It seems like nothing to me. But she's not use to having health problems, so this all just really threw us for a loop. I'm trying to stay strong for her, even though I do admit, I worry about her. She's dealt a lot with depression in the past, and I don't want this to throw her back into it. It is hard enough to get out.

robot_potato · February 2016

I had symptoms starting at 21, and was diagnosed with relapsing - remitting ms at 27, i am now 29. I can go for months without issue, then I will hit a wall, my face, hands and back will have numb patches, I have extreme vertigo (pass out from bending over or climbing stairs or sitting up/standing quickly), one or both legs will turn to rubber beneath me, sometimes I drool. Extreme heat or cold make it much worse. Each time I hit a relapse the symptoms are more and worse. I miss work- taking sick leave for weeks - sometimes months at a time. My job is not wheelchair - friendly, so I am stuck in administration doing paperwork if I can function, stuck at home if I can not. I am lucky I had years of experience at my job before things got bad, not all employers are so graceful as to put up with so much missed work.

When I am good, I am great, but it is hard to live in the moment and not think about when everything will go to hell again. It is one hell of an adjustment knowing that it will take so much out of you, sooner or later. Treat her like you always have unless she asks for different. Defend her when people judge, because they will.
I don't have much else to add, just know that she is still the same person, more or less. Invite her to take part in activities, even if she can't, it will help remind her of the time when she can do things, that life is still worth living.

Multiple Sclerosis

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