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"MS is no big deal these days"
I was dx last month, so I'm digesting. As someone who is a complete control feelings about my emotions (Hear my sarcasm there) .. it's been a process.
My MS Neuro is **fantastic**. Empathetic, patient, and more. She gave me a week to digest after the dx before talking meds. When I was dx, shhe explained that a diagnosis these days is much different than one 5, 10, or more years ago. That with meds, I should expect to be in remission, etc etc etc. Then I talked to a few people who have MS and are on the meds, and are doing pretty well.
So, it's no big deal, right?
Then, I start the Copaxone. For anyone who has been on it - you know IT is a big deal! They send someone to your house with spread tons of things across your kitchen table, and spends 90 minutes teaching you to shoot yourself up every day. And it hurts. So every day I have to set aside 30min to deal with the sting.
Then, I get some MS Tingles. Not bad -- long story, doc is repeating my MRI next week to look for new lesions, but either way I'm going for IV Steroids as a band-aid until the Copaxone sets in (about 6 mo from now) ... so now, I need to take time off from work (AGAIN) for MORE MRIs, and then MORE time for 2-hour infusions, strapped to a needle like a cancer patient.
But it's no big deal.
I'm trying to balance the NO BIG DEAL with the BIG DEAL it feels like. I rationally get it -- I really, really do. Underneath though, there are emotions bubbling that I just cannot put into words yet. I have a great therapist, she's been my therapist for over 12 years. She says I'm grieving - I logically get that .. and recognize the anger I've been feeling toward everything/anything ...
Meanwhile, I'm trying to keep it together for my husband and two little girls, acting normal ... because it's no big deal, right??
My MS Neuro is **fantastic**. Empathetic, patient, and more. She gave me a week to digest after the dx before talking meds. When I was dx, shhe explained that a diagnosis these days is much different than one 5, 10, or more years ago. That with meds, I should expect to be in remission, etc etc etc. Then I talked to a few people who have MS and are on the meds, and are doing pretty well.
So, it's no big deal, right?
Then, I start the Copaxone. For anyone who has been on it - you know IT is a big deal! They send someone to your house with spread tons of things across your kitchen table, and spends 90 minutes teaching you to shoot yourself up every day. And it hurts. So every day I have to set aside 30min to deal with the sting.
Then, I get some MS Tingles. Not bad -- long story, doc is repeating my MRI next week to look for new lesions, but either way I'm going for IV Steroids as a band-aid until the Copaxone sets in (about 6 mo from now) ... so now, I need to take time off from work (AGAIN) for MORE MRIs, and then MORE time for 2-hour infusions, strapped to a needle like a cancer patient.
But it's no big deal.
I'm trying to balance the NO BIG DEAL with the BIG DEAL it feels like. I rationally get it -- I really, really do. Underneath though, there are emotions bubbling that I just cannot put into words yet. I have a great therapist, she's been my therapist for over 12 years. She says I'm grieving - I logically get that .. and recognize the anger I've been feeling toward everything/anything ...
Meanwhile, I'm trying to keep it together for my husband and two little girls, acting normal ... because it's no big deal, right??
Best Answer
MS is no big deal relative to malignant, inoperable brain tumor. Nor is a big deal relative to having MS 20 years ago when there were no DMDs. Other than that MS is a big deal :-)
MS is an unpredictable, incurable, progressive disease effecting your central nervous system. I think that qualifies as a big deal! We all have to wrap our heads around it in our own way.
If you were to see me walking down the street you would never suspect that I had MS. I live on my own and care for 2 birds and 2 cats in addition to myself. I get up every day Monday-Friday and go to work. So what's the big deal with having MS someone might ask?
The big deal is:
I have tinnitus.
It can take forever for me to pee.
I have double vision for a few minutes every morning.
I can't walk more than 40 minutes.
I can get very constipated.
My balance can make me walk like a drunk.
I have to have monthly blood tests.
I have to have semi-annual MRIs.
I have to have semi-annual infusions in sets of two; 4 hours each, 2 weeks apart.
My feet hurt and there is nothing wrong with them.
People who do not have MS don't likely have to accommodate things like those I've listed in their daily lives. We do :-) And to make it even more of a big deal, we never know what body part might not work right tomorrow!
So in my opinion, having MS IS a big deal, and it's OK for you to think so too :-)
Kyle
MS is an unpredictable, incurable, progressive disease effecting your central nervous system. I think that qualifies as a big deal! We all have to wrap our heads around it in our own way.
If you were to see me walking down the street you would never suspect that I had MS. I live on my own and care for 2 birds and 2 cats in addition to myself. I get up every day Monday-Friday and go to work. So what's the big deal with having MS someone might ask?
The big deal is:
I have tinnitus.
It can take forever for me to pee.
I have double vision for a few minutes every morning.
I can't walk more than 40 minutes.
I can get very constipated.
My balance can make me walk like a drunk.
I have to have monthly blood tests.
I have to have semi-annual MRIs.
I have to have semi-annual infusions in sets of two; 4 hours each, 2 weeks apart.
My feet hurt and there is nothing wrong with them.
People who do not have MS don't likely have to accommodate things like those I've listed in their daily lives. We do :-) And to make it even more of a big deal, we never know what body part might not work right tomorrow!
So in my opinion, having MS IS a big deal, and it's OK for you to think so too :-)
Kyle
I should add that, inspite of it being a big deal, having MS can be manageable. We just have to accept that our lives have changed and adjust accordingly :-0
Kyle
Kyle
And we all go thru the stages of denial, anger, etc., over and over. It can take awhile for you to accept MS as your BFF, but you will, in your own way, in your own time, and we're here if you want to vent, scream (not too loudly) or just ask questions.
We, as Kyle says, have adjust our lives to accommodate MS and the people who think we look so good………yeah………..its ok to think its a big deal but don't let it run your life…………you run it.
Sarah
We, as Kyle says, have adjust our lives to accommodate MS and the people who think we look so good………yeah………..its ok to think its a big deal but don't let it run your life…………you run it.
Sarah
I am 8 weeks since dx & am still going around in circles but....
I can't say it's hit me that hard though because I have had unexplainable symptoms spanning back 15 plus years. I already have grown up with RA & other autoimmune conditions so I'm no stranger to having the IV's & nasty immunosuppressants to treat that. I already had physical limitations as my arthritis is dominant in my entire spine, hips & shoulders.
I was already on Rituximab for 5.5 years before dx so treatment hasn't been something I really needed to think hard about. I am feeling so much relief because I have had so much wrong with me in my life that I'm sure people thought I was nuts or something. My family can now say "so that was the MS" which is better than being told constantly "why do you have so many things wrong with you" so that bit has definitely been a benefit for me.
I can say that it may be easier on me because of the above. I can also say that I am on a roller coaster with emotions & have no support other than this forum. I don't have anything set up yet where I can vent. I'm single & both my parents are sick & don't want to know or understand what's going on with me. I think that is the hardest for me. I know I would feel much better if I had a counsellor to vent to.
I joke around a lot which helps me to deal with stuff.
I don't think you would be normal if you didn't feel anything from having a dx such as MS. I think you have to ride through the emotions & try to deal with the here & now.....trying not to focus on "what can happen" which is easier said than done. I hope this is making some sense because my cog fog is ever present.
Vent, cry, scream, laugh do what you have to because I believe it's part of living with MS. At the end of the day you are still the person you were before you were dx'd with MS even if you have been left with residual symptoms. Give yourself a big hug because your doing well.
Take Care
Karry.
I can't say it's hit me that hard though because I have had unexplainable symptoms spanning back 15 plus years. I already have grown up with RA & other autoimmune conditions so I'm no stranger to having the IV's & nasty immunosuppressants to treat that. I already had physical limitations as my arthritis is dominant in my entire spine, hips & shoulders.
I was already on Rituximab for 5.5 years before dx so treatment hasn't been something I really needed to think hard about. I am feeling so much relief because I have had so much wrong with me in my life that I'm sure people thought I was nuts or something. My family can now say "so that was the MS" which is better than being told constantly "why do you have so many things wrong with you" so that bit has definitely been a benefit for me.
I can say that it may be easier on me because of the above. I can also say that I am on a roller coaster with emotions & have no support other than this forum. I don't have anything set up yet where I can vent. I'm single & both my parents are sick & don't want to know or understand what's going on with me. I think that is the hardest for me. I know I would feel much better if I had a counsellor to vent to.
I joke around a lot which helps me to deal with stuff.
I don't think you would be normal if you didn't feel anything from having a dx such as MS. I think you have to ride through the emotions & try to deal with the here & now.....trying not to focus on "what can happen" which is easier said than done. I hope this is making some sense because my cog fog is ever present.
Vent, cry, scream, laugh do what you have to because I believe it's part of living with MS. At the end of the day you are still the person you were before you were dx'd with MS even if you have been left with residual symptoms. Give yourself a big hug because your doing well.
Take Care
Karry.
COMMUNITY LEADER
Hey you need to slap that thought, right out of your head!
Sure being dx with MS is very different today than it use to be, before disease modifying drugs were available but that doesn't mean MS isn't still a big deal, being dx today basically means a better quality of life and a better shot at taming the MS beast!
All your hopes, dreams, and life plans are still within your reach, you can still do it, still achievable and live the good life you planned before your dx but to do so, you can't make the mistake of thinking MS is no biggie or try to pretend it is, without paying too big a price........your mental health.
Give your self time to ride the emotional roller coaster, in time you won't feel so raw, so be kind to your self and take all the time and TLC that YOU need!
HUGS.............JJ
Sure being dx with MS is very different today than it use to be, before disease modifying drugs were available but that doesn't mean MS isn't still a big deal, being dx today basically means a better quality of life and a better shot at taming the MS beast!
All your hopes, dreams, and life plans are still within your reach, you can still do it, still achievable and live the good life you planned before your dx but to do so, you can't make the mistake of thinking MS is no biggie or try to pretend it is, without paying too big a price........your mental health.
Give your self time to ride the emotional roller coaster, in time you won't feel so raw, so be kind to your self and take all the time and TLC that YOU need!
HUGS.............JJ
No DMD's can help me my neuro has told me. (I have SPMS). My family do not understand it and its seems do not care very much!
I want to have HSCT because my walking is getting much worse and soon I may not qualify. My family could easily help financially but choose to believe that since it is not a main stream treatment is is just quack stuff, but are not
interested in checking out the info. Basically they don't want to have to get involved financially and I cannot afford
the treatment myself, so I am about to start fundraising. My sister in law who actually is a district nurse and some of
her patients are imobilized MS sufferers, said that being in a wheel chair is not so bad???? This is someone who has
never been in one! I am shocked but not really surprised. I am determined to get this treatment which I know works
as it has been going on since the 50's for cancer patients and they have only in the last 10 years worked out that
it also cures MS.
For people like me that no drugs can help.....it is the only choice.
It just hurts when family do not care enough to help, even 'though you have helped them all your life!!
Tina
I want to have HSCT because my walking is getting much worse and soon I may not qualify. My family could easily help financially but choose to believe that since it is not a main stream treatment is is just quack stuff, but are not
interested in checking out the info. Basically they don't want to have to get involved financially and I cannot afford
the treatment myself, so I am about to start fundraising. My sister in law who actually is a district nurse and some of
her patients are imobilized MS sufferers, said that being in a wheel chair is not so bad???? This is someone who has
never been in one! I am shocked but not really surprised. I am determined to get this treatment which I know works
as it has been going on since the 50's for cancer patients and they have only in the last 10 years worked out that
it also cures MS.
For people like me that no drugs can help.....it is the only choice.
It just hurts when family do not care enough to help, even 'though you have helped them all your life!!
Tina
There are actually several people on this very forum with SPMS who are taking mainstream treatments. Before anything else, I'd find another neurologist. There are no cures as yet for MS, but there are options for those with SPMS.
It's true that the outlook for newly diagnosed MSers is a lot more promising than formerly, by quite a bit. But to say MS is no big deal is nuts, in my opinion.
MS affects so many aspects of my life. This morning I was in my kitchen mixing up something when suddenly I had to pee, desperately. I ran to the bathroom, but too late for my clothes, which I had put on only a few minutes earlier. That was maybe the 8th or 9th time that's happened, and 3 or 4 have been in public, literally. Not to mention all the times at home when I did make it to the bathroom in time. But the bladder spasms following these events are excruciating.
I could name so many other kinds of changes in my life, all negative, due to MS, but the most recent one was today. True, it's not ebola, it's not ALS, it's not something else equally devastating, at least not yet. But anyone who dismisses MS as no big deal doesn't have it.
ess
MS affects so many aspects of my life. This morning I was in my kitchen mixing up something when suddenly I had to pee, desperately. I ran to the bathroom, but too late for my clothes, which I had put on only a few minutes earlier. That was maybe the 8th or 9th time that's happened, and 3 or 4 have been in public, literally. Not to mention all the times at home when I did make it to the bathroom in time. But the bladder spasms following these events are excruciating.
I could name so many other kinds of changes in my life, all negative, due to MS, but the most recent one was today. True, it's not ebola, it's not ALS, it's not something else equally devastating, at least not yet. But anyone who dismisses MS as no big deal doesn't have it.
ess
MS is a big deal if it is to you. We can't always count on family. I did my own fundraiser for Cancer a few years back. I was an artist. I did fifty paintings and had friends who were artists donated work. We sold most of it and 100% went to pay off my Cancer bills. One friend gave two paintings both over $1000 we sold both. Over 70 people came. I did not know I had that many friends. In two hours we paid off 4 hospital bills. It was my fiftieth birthday party as well.
My sister in law does not believe I should get Cancer treatment because it is too expensive. My treatments are over $100,000 a week. I have insurance but I have a lot in copays and such. She gets free care at Walter Reed for her Cancer. She one time broke her arm and waited to drive back to Maryland to get surgery on it. I am not that tough.
Alex
My sister in law does not believe I should get Cancer treatment because it is too expensive. My treatments are over $100,000 a week. I have insurance but I have a lot in copays and such. She gets free care at Walter Reed for her Cancer. She one time broke her arm and waited to drive back to Maryland to get surgery on it. I am not that tough.
Alex
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It takes others sufferers of this largely invisible disease to band together to care, comfort, and counsel each other through the rough ride. Certainly that first year was a doozy for me and I think most people.
So feel free to vent all those fears, frustrations, disappointments, and things that make you angry. I think it does you the world of good by giving you perspective. Some thoughts are irrational like ''MS is a death sentence' while others are not like 'I can't rely on my health anymore'. It's a learning process.
So stay close to your MS family to soothe and calm you when your real family and friends leave you feeling blue.
Blessings
Alex