Aa
diagnosed with MS< give me some info and help
Hi,
I was diagnosed with MS, just yesterday. would you please let me know what the best treatments are, are they really treating or just called so? my doc said I have to be on one kind of injection forever. I am female 27 and worried about its progress., my knowledge is basically zero,
regards
I was diagnosed with MS, just yesterday. would you please let me know what the best treatments are, are they really treating or just called so? my doc said I have to be on one kind of injection forever. I am female 27 and worried about its progress., my knowledge is basically zero,
regards
Welcome to the forum! You are among friends. This is the most supportive bunch you'll find. I wish I could give you the info you need, but I am not knowledgeable enough to do it justice. Looking for answers myself. Hang tight and our resident experts will be along soon. Several of our members are having a rough time right now with their own symptoms, so it may take a bit, but they will come.
Penn
Penn
I am so sorry to hear that Ms brought you to us. But welcome and know that you are now among friends. We walk with you and beside you through every step.
When I went through my diagnosis I went through a period of greiveing and then after that was complete, I started to get serious about beating this dern thing.
Please lean on us. We are here for you.
Read everything you can about MS. Some of it is confusing and some of it is scary. If there is anything you dont' understand please come back on the forum and post again with your specific questions.
Best Wishes dear...you certainly have the right name on the forum, HOPE! That's what it's all about....Never give up hope...
Heather
When I went through my diagnosis I went through a period of greiveing and then after that was complete, I started to get serious about beating this dern thing.
Please lean on us. We are here for you.
Read everything you can about MS. Some of it is confusing and some of it is scary. If there is anything you dont' understand please come back on the forum and post again with your specific questions.
Best Wishes dear...you certainly have the right name on the forum, HOPE! That's what it's all about....Never give up hope...
Heather
Hi! I am so sorry that you had to get to know us under these circumstances. But, there is a great group of supportive people here. Penn and Heather and others are great. We have a retired resident doctor, Quix, who chimes in when she cans. She has health issues of her own and we miss her when she is down for even a little while.
I was just recently diagnosed with MS, myself. There are several types of injectable drugs called the ABC drugs (avonex, betaserones, and copaxone). There are also other drugs which have been on the market. The injectable ABC drugs are supposed to help stop the progression of disability in MS. According to a recent study, a person who takes one of the drugs, as prescribed, for at least two years generally will only progress in disability over an eight year period the amount that a relapsing-remitting person with MS not taking the drugs will progress in two years. More study is needed to compare the effects further down the road and to garner more information.
It has been found that MS is a continually progressive disease and can be active even though new lesions do not show on the MRIs. The drugs are expensive, but there are sometimes ways to get help with purchasing them, depending upon your situation.
There have been some good posts by other members on previous pages (i.e. the one about MRI lesions by Quix [Quixotic1]. They get bumped up every couple of weeks or so.
Others will chime in later. I hope this helps to get you started in your search for answers. Often, the earlier age that MS is diagnosed, the slower the progression rate. Of course, every person runs a different course. And there are different forms and progression of MS. As Heather stated, try to read as much as you can so that you can be an informed advocate of your health. And if you have other questions, bad news, good news, or just need to talk this group is always here for you...even if you just need to rant and rave. Many of us have pulled through some tough times with the aid of the wonderful people here.
So, again, WELCOME!!!
I was just recently diagnosed with MS, myself. There are several types of injectable drugs called the ABC drugs (avonex, betaserones, and copaxone). There are also other drugs which have been on the market. The injectable ABC drugs are supposed to help stop the progression of disability in MS. According to a recent study, a person who takes one of the drugs, as prescribed, for at least two years generally will only progress in disability over an eight year period the amount that a relapsing-remitting person with MS not taking the drugs will progress in two years. More study is needed to compare the effects further down the road and to garner more information.
It has been found that MS is a continually progressive disease and can be active even though new lesions do not show on the MRIs. The drugs are expensive, but there are sometimes ways to get help with purchasing them, depending upon your situation.
There have been some good posts by other members on previous pages (i.e. the one about MRI lesions by Quix [Quixotic1]. They get bumped up every couple of weeks or so.
Others will chime in later. I hope this helps to get you started in your search for answers. Often, the earlier age that MS is diagnosed, the slower the progression rate. Of course, every person runs a different course. And there are different forms and progression of MS. As Heather stated, try to read as much as you can so that you can be an informed advocate of your health. And if you have other questions, bad news, good news, or just need to talk this group is always here for you...even if you just need to rant and rave. Many of us have pulled through some tough times with the aid of the wonderful people here.
So, again, WELCOME!!!
Hi! I am so sorry that you had to get to know us under these circumstances. But, there is a great group of supportive people here. Penn and Heather and others are great. We have a retired resident doctor, Quix, who chimes in when she cans. She has health issues of her own and we miss her when she is down for even a little while.
I was just recently diagnosed with MS, myself. There are several types of injectable drugs called the ABC drugs (avonex, betaserones, and copaxone). There are also other drugs which have been on the market. The injectable ABC drugs are supposed to help stop the progression of disability in MS. According to a recent study, a person who takes one of the drugs, as prescribed, for at least two years generally will only progress in disability over an eight year period the amount that a relapsing-remitting person with MS not taking the drugs will progress in two years. More study is needed to compare the effects further down the road and to garner more information.
It has been found that MS is a continually progressive disease and can be active even though new lesions do not show on the MRIs. The drugs are expensive, but there are sometimes ways to get help with purchasing them, depending upon your situation.
There have been some good posts by other members on previous pages (i.e. the one about MRI lesions by Quix [Quixotic1]. They get bumped up every couple of weeks or so.
Others will chime in later. I hope this helps to get you started in your search for answers. Often, the earlier age that MS is diagnosed, the slower the progression rate. Of course, every person runs a different course. And there are different forms and progression of MS. As Heather stated, try to read as much as you can so that you can be an informed advocate of your health. And if you have other questions, bad news, good news, or just need to talk this group is always here for you...even if you just need to rant and rave. Many of us have pulled through some tough times with the aid of the wonderful people here.
So, again, WELCOME!!!
I was just recently diagnosed with MS, myself. There are several types of injectable drugs called the ABC drugs (avonex, betaserones, and copaxone). There are also other drugs which have been on the market. The injectable ABC drugs are supposed to help stop the progression of disability in MS. According to a recent study, a person who takes one of the drugs, as prescribed, for at least two years generally will only progress in disability over an eight year period the amount that a relapsing-remitting person with MS not taking the drugs will progress in two years. More study is needed to compare the effects further down the road and to garner more information.
It has been found that MS is a continually progressive disease and can be active even though new lesions do not show on the MRIs. The drugs are expensive, but there are sometimes ways to get help with purchasing them, depending upon your situation.
There have been some good posts by other members on previous pages (i.e. the one about MRI lesions by Quix [Quixotic1]. They get bumped up every couple of weeks or so.
Others will chime in later. I hope this helps to get you started in your search for answers. Often, the earlier age that MS is diagnosed, the slower the progression rate. Of course, every person runs a different course. And there are different forms and progression of MS. As Heather stated, try to read as much as you can so that you can be an informed advocate of your health. And if you have other questions, bad news, good news, or just need to talk this group is always here for you...even if you just need to rant and rave. Many of us have pulled through some tough times with the aid of the wonderful people here.
So, again, WELCOME!!!
Sorry about the double post. Either my finger or this computer is a little schizoid right now!
Hi dears,
you have no idea how calming and supportive your words were to me. the first thing after I got out of dr's office I did was to cry for 5,6 hours, I was not able to stop. It is so hard to believe that MS came out of no where. I am glad all of you are so optimistic and kind and helpful. I am so scared of being disabled over time even with medication. is that the destiny for all of us? I pray not. I am sure God will help all of us, I will keep praying for all of you guys ...
now what I just have these questions:
are you guys deficient in B12(how I started) , or folic acid or Omega3
do you have high consumption of sugar,
do you have contact with paraformaldehyde(I personally work with it for my research)
I think what we need to do is to research for ourselves. autoimmunity is triggered with stress are you guys stressful? I have been under so much pressure for more than 2 years b/c of my research and stuff.
Please as you mentioned walk me through this, I don't want to give up, I first trust God and then looking forward to your supportive and informative words. pray for me.
Very best regards and special thanks to all of you
you have no idea how calming and supportive your words were to me. the first thing after I got out of dr's office I did was to cry for 5,6 hours, I was not able to stop. It is so hard to believe that MS came out of no where. I am glad all of you are so optimistic and kind and helpful. I am so scared of being disabled over time even with medication. is that the destiny for all of us? I pray not. I am sure God will help all of us, I will keep praying for all of you guys ...
now what I just have these questions:
are you guys deficient in B12(how I started) , or folic acid or Omega3
do you have high consumption of sugar,
do you have contact with paraformaldehyde(I personally work with it for my research)
I think what we need to do is to research for ourselves. autoimmunity is triggered with stress are you guys stressful? I have been under so much pressure for more than 2 years b/c of my research and stuff.
Please as you mentioned walk me through this, I don't want to give up, I first trust God and then looking forward to your supportive and informative words. pray for me.
Very best regards and special thanks to all of you
Crying was one of the best things that you could have done for yourself. Are we afraid that we will become disabled? Yes! But I figure, if I am going to be stricten with a disease, it's better to know that MS is not fatal and there are the means available to fight it's progression.
You will see as times progresses, when you get through your greiveing; you will start to become angry and want to fight with everything that is within you. You'll learn to adapt to things that MS has taken away from you. You will not let MS define who you are. You will say that you are a person that is living with MS. Not a person with MS.
Is MS all about wheelchairs and canes, no. Are there some people that require assistance to walk, yes. Imagine if we where able to instantly look at a person and know the physical malady's they go through. I would bet that we would be surprised to learn how many of those people acutally have MS and "we can't see it." Unless you see me trip over a blade of grass, you may not know that I have MS. Unless you heard me slur my words sometimes, you would nver know I had MS.
One day you may see me walking down the street with the aid of a cane, the next week, you may see me walking briskly, with no assistance. I have "invisible MS." I can't begin to name the people that I have met that have been surprised to know that I live with MS.
The brain is a remarkable organ. It can be damaged in so many areas but yet you will show no outwardly symptoms. The brain is a little known organ in our bodies that can take over the tasks from many damaged cells.
The brain actually fascinates me. Despite the repeated attacks from MS, it continually tries to try to heal itself. At first it does it very efficiently, then it continues to try, but this time leaving scars over the damaged area. Not one scar but multiple scars. Hence the term Multiple (meaning many) Sclerosis (meaning scars) We can have damage in certain areas of our brains and other parts of the brain take over the function. In all cases, no, but it truly does in ALOT of cases. More cases than are reported I am sure.
You only hear all the bad things about MS. You don't hear much of the success stories of living a good quality of life with MS. It CAN be painful. Excruiating pain at times. It can slow us down, it makes us seem more clumsy sometimes, but does it kill us? NO.
So we move onward and forward, despite the obstacles it may present. We lean on our family and our friends for support. Advances in Multiple Slcerosis are being made all the time. We at least live in a day and age, where there is treatment available to help slow down the effects of MS and it's progression. It's true that MS never sleeps, but to let it identify who you are, will eventually NOT be acceptable to you.
I have noticed something over the many years since I have been diagnosed. Have you ever noticed how MS seems to strike suc strong willed people? People with real guts and determination? I have. Have I seen MS pull others down? Of course I have, but when the time is right in there lives, they continue the fight. And that is exactly what you will learn to do. FIGHT!
Please take some comfort in knowing that as long as there are support groups such as this one - you will never face this disease alone. You will be embraced and cared about, just like family. You will find comfort in tallking with those that are dealing with the same problems as you. It will give you strength to continue the fight. You will never be alone.
I am sorry that MS has brought you here, but so thankful that there is a forum such as this one, that allows people to come together as one, to FIGHT together in our battle to not let this disease take away who we are.
I send you prayers but also I send you offers of friendship and understanding. You are now amongst friends....
WE are with you, Hope. Your "MedHelp" name says it all....HOPE!
Best Wishes, Heather
You will see as times progresses, when you get through your greiveing; you will start to become angry and want to fight with everything that is within you. You'll learn to adapt to things that MS has taken away from you. You will not let MS define who you are. You will say that you are a person that is living with MS. Not a person with MS.
Is MS all about wheelchairs and canes, no. Are there some people that require assistance to walk, yes. Imagine if we where able to instantly look at a person and know the physical malady's they go through. I would bet that we would be surprised to learn how many of those people acutally have MS and "we can't see it." Unless you see me trip over a blade of grass, you may not know that I have MS. Unless you heard me slur my words sometimes, you would nver know I had MS.
One day you may see me walking down the street with the aid of a cane, the next week, you may see me walking briskly, with no assistance. I have "invisible MS." I can't begin to name the people that I have met that have been surprised to know that I live with MS.
The brain is a remarkable organ. It can be damaged in so many areas but yet you will show no outwardly symptoms. The brain is a little known organ in our bodies that can take over the tasks from many damaged cells.
The brain actually fascinates me. Despite the repeated attacks from MS, it continually tries to try to heal itself. At first it does it very efficiently, then it continues to try, but this time leaving scars over the damaged area. Not one scar but multiple scars. Hence the term Multiple (meaning many) Sclerosis (meaning scars) We can have damage in certain areas of our brains and other parts of the brain take over the function. In all cases, no, but it truly does in ALOT of cases. More cases than are reported I am sure.
You only hear all the bad things about MS. You don't hear much of the success stories of living a good quality of life with MS. It CAN be painful. Excruiating pain at times. It can slow us down, it makes us seem more clumsy sometimes, but does it kill us? NO.
So we move onward and forward, despite the obstacles it may present. We lean on our family and our friends for support. Advances in Multiple Slcerosis are being made all the time. We at least live in a day and age, where there is treatment available to help slow down the effects of MS and it's progression. It's true that MS never sleeps, but to let it identify who you are, will eventually NOT be acceptable to you.
I have noticed something over the many years since I have been diagnosed. Have you ever noticed how MS seems to strike suc strong willed people? People with real guts and determination? I have. Have I seen MS pull others down? Of course I have, but when the time is right in there lives, they continue the fight. And that is exactly what you will learn to do. FIGHT!
Please take some comfort in knowing that as long as there are support groups such as this one - you will never face this disease alone. You will be embraced and cared about, just like family. You will find comfort in tallking with those that are dealing with the same problems as you. It will give you strength to continue the fight. You will never be alone.
I am sorry that MS has brought you here, but so thankful that there is a forum such as this one, that allows people to come together as one, to FIGHT together in our battle to not let this disease take away who we are.
I send you prayers but also I send you offers of friendship and understanding. You are now amongst friends....
WE are with you, Hope. Your "MedHelp" name says it all....HOPE!
Best Wishes, Heather
Hi there! I was recently diagnosed with MS myself and the news floored me! I am 31, physically active, a new mom, and just finished grad school. I was very angry and I even more angry that I had no one to talk to or who understood my pain. Joining this forum is surely making things better as far as getting info and support. I was deficient in vitamin D, and did not appreciate hearing that I would have to take injections for this. I chose to take Rebif because of the smaller needle and the other meds are on WalMart's $4 prescription list - oxybutin (bladder), baclofen (spasticity), and paxi (anxiety). I have stopped taking the xs and started an exercise program at my gym. I don't recommend this without doctor's consent, but I do feel a lot better. I also started taking Omega 3, B Complex, Vita D, and Calcium. I'm working with my doc to see how long this works, but she is good to understand that no one else knows my body but me.
I'm reading a lot about this because I had no clue about MS until I was hospitalized for treatment and rehab. I hope this helped a little, please believe that you have a lot of support in this forum! Best wishes.
Buffalogirl
I'm reading a lot about this because I had no clue about MS until I was hospitalized for treatment and rehab. I hope this helped a little, please believe that you have a lot of support in this forum! Best wishes.
Buffalogirl
WOW...about all I can say is WELCOME! You have had the best of the best give you your first "dose" of support honey! The people on the Forum are incredibly supportive and they have been a wonderful help to me! Please know that should you required to rant, rave, laugh or cry, we are here for you 24/7 to lean on and if we don't know the answers to your questions we will pass you on to someone who does or try to find the answer for you ourselves.
You are in a good place here honey and please keep in contact with us. You will find that as time goes by you will make some wonderful cyberfriends that sometimes understand a whole lot better than your regular friends or family. Sometimes your real friends and family just don't "get" what someone with MS has to deal with and because it is an "invisible" disease in most cases they tend to hide from it cause it is a whole lot easier to deal with it that way.
We who have been diagnosed for a while have had to deal with a lot of situations where these people in our lives seem to desert us or ignore us because of this crappy problem we have...but, you are at an advantage because we have! Between the whole group you will usually find at least one that has gone through the same situation before and because of this we are able to pass on advice on how to deal with that particular situation! Please know that we care about you and how you are dealing with your disease and we will back you up all the way!
Take Care and Lots of Hugs,
Rena705
You are in a good place here honey and please keep in contact with us. You will find that as time goes by you will make some wonderful cyberfriends that sometimes understand a whole lot better than your regular friends or family. Sometimes your real friends and family just don't "get" what someone with MS has to deal with and because it is an "invisible" disease in most cases they tend to hide from it cause it is a whole lot easier to deal with it that way.
We who have been diagnosed for a while have had to deal with a lot of situations where these people in our lives seem to desert us or ignore us because of this crappy problem we have...but, you are at an advantage because we have! Between the whole group you will usually find at least one that has gone through the same situation before and because of this we are able to pass on advice on how to deal with that particular situation! Please know that we care about you and how you are dealing with your disease and we will back you up all the way!
Take Care and Lots of Hugs,
Rena705
I am so sorry to hear that you have found yourself in the same situation as the rest of us on here. But please listen carefully to what Heather has written so elloquently!!!! That is the best advice you will every recieve as far as "living" with MS and the symptoms. I am still undiagnosed but have so many of the same symptoms as everyone else on this forum, and still very new to all of this. I also went thru a grieving period but found so much "hope" by reading and listening to what others are going thru on this site and how they are "living" with thier symptoms from day to day. And I agree with Heather, once the grieving is over and you have "accepted" your diagnoses, and you have increased your knowledge thru research, you will find within yourself "anger" and the fight you will need to live your life as normal as possible. The hardest thing for me was not dealing with my symptoms, but dealing with the people in my life who are the closest to me who can not "SEE" anything wrong with me physically, especially still being undiagnosed. Maybe if or when the Neurologist finally can give me a definant diagnosis, dealing with others will be easier.
There is something that was said to me that has given me the "fight" I need to keep going every single day, and I would love to share that with you, maybe it will help you as much as it has me. My fiance is the most couragous person I have ever met, he is afraid of nothing but fear itself. He lives his life with the attitude that if you are afraid of something...Do it afraid!!! But Do It!!!! So I ask him how he gets thru difficult times in his life and this was his response to me........
Think about having a fight with another person....someone tanglable that you can see, touch, feel....he said this person might bloody his nose and kick his hiney (basicly win the fight) for seven days straight....BUT on that 8th day....he will still come back fighting!!!!! In other words....he just never gives up the fight!!!
Those words hit home for me, I could relate that theory to the "episodes" with my symptoms. Every morning I wake up fighting, determined today is going to be normal, especially since mornings are the best part of my day. By mid afternoon the fatigue usually sets in and my symptoms are stronger. I have never been a morning person, I love sleeping late and staying awake till late at night, but I have learned that if I wake early and spend my mornings doing things I want to get done that day, then when the fatigue does set in later in the afternoon, I have more time to rest. Fortunantly I work a job where I can go into work very early and be home early, as I am not on a set schedule. But there are times when the symptoms do interfer with my job no matter what time of day. I consider that a day when it "bloodied my nose", but the next morning I wake to the little note on my bathroom mirror that says "TODAY IS AN 8TH DAY".....then i go make my coffee and see the little note there that says "TODAY IS AN 8TH DAY"....i take my coffee and go sit down at the computer and find another little note on a picture on my desktop....again reminding me that today is an 8th day!!!! When I hit a period in my day when I want to just lay it down and go rest, I can see all these little reminders in my head, and it gives me the strength to get thru the day. Another quote that has helped me when I have longer "attacks" is "THIS TO SHALL PASS!!!!".
Whatever it might be, a quote, something someone close to you has said, a scripture from the bible....find something that can be an inspiration, a constant reminder to you that there is always "HOPE"....that no matter how "bad" today might be, tomorrow WILL be better!!! Then if you do have a bad day, that little piece of inspiration will give you strength and courage, and will keep you from falling into the "trap" of depression that so many people experience when dealing with pain.
“Never let go of HOPE. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back and laugh at what has passed and you will ask yourself... 'How did I get through all of that?” (quote by unknown author)
BE STRONG AND COURAGEOUS!!!!
There is something that was said to me that has given me the "fight" I need to keep going every single day, and I would love to share that with you, maybe it will help you as much as it has me. My fiance is the most couragous person I have ever met, he is afraid of nothing but fear itself. He lives his life with the attitude that if you are afraid of something...Do it afraid!!! But Do It!!!! So I ask him how he gets thru difficult times in his life and this was his response to me........
Think about having a fight with another person....someone tanglable that you can see, touch, feel....he said this person might bloody his nose and kick his hiney (basicly win the fight) for seven days straight....BUT on that 8th day....he will still come back fighting!!!!! In other words....he just never gives up the fight!!!
Those words hit home for me, I could relate that theory to the "episodes" with my symptoms. Every morning I wake up fighting, determined today is going to be normal, especially since mornings are the best part of my day. By mid afternoon the fatigue usually sets in and my symptoms are stronger. I have never been a morning person, I love sleeping late and staying awake till late at night, but I have learned that if I wake early and spend my mornings doing things I want to get done that day, then when the fatigue does set in later in the afternoon, I have more time to rest. Fortunantly I work a job where I can go into work very early and be home early, as I am not on a set schedule. But there are times when the symptoms do interfer with my job no matter what time of day. I consider that a day when it "bloodied my nose", but the next morning I wake to the little note on my bathroom mirror that says "TODAY IS AN 8TH DAY".....then i go make my coffee and see the little note there that says "TODAY IS AN 8TH DAY"....i take my coffee and go sit down at the computer and find another little note on a picture on my desktop....again reminding me that today is an 8th day!!!! When I hit a period in my day when I want to just lay it down and go rest, I can see all these little reminders in my head, and it gives me the strength to get thru the day. Another quote that has helped me when I have longer "attacks" is "THIS TO SHALL PASS!!!!".
Whatever it might be, a quote, something someone close to you has said, a scripture from the bible....find something that can be an inspiration, a constant reminder to you that there is always "HOPE"....that no matter how "bad" today might be, tomorrow WILL be better!!! Then if you do have a bad day, that little piece of inspiration will give you strength and courage, and will keep you from falling into the "trap" of depression that so many people experience when dealing with pain.
“Never let go of HOPE. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back and laugh at what has passed and you will ask yourself... 'How did I get through all of that?” (quote by unknown author)
BE STRONG AND COURAGEOUS!!!!
What you wrote and how you wrote it made me weep like a baby. I have never read anything more beautiful about what the "fight" is all about. What a wonderful man that you have by your side.
Oh god bless you Dreamy and of course all others on this forum. And thank you for such a beautiful post. Now I am headed to that box of Kleenex.
Heather
Oh god bless you Dreamy and of course all others on this forum. And thank you for such a beautiful post. Now I am headed to that box of Kleenex.
Heather
Jope welcome, you are definetly in the right place, Heather and the others have given you the best advice. Stay strong and prayerful
Yes Dreamy that was beautiful, I am not diagnosed either, but your post has really inspired me. I have really been feeling like giving up, not going to the dr anymore just feeling like staying in the bed feeling sorry for myself, which is not good because I suffer from depression.
Thank you again. I know I can't give up know matter how long it takes to get to the bottom of this I have to keep going. I think I'll make some little post myself as a reminder not to give up on a daily basis.
Heather it brought tears to my eyes as well
Help
Yes Dreamy that was beautiful, I am not diagnosed either, but your post has really inspired me. I have really been feeling like giving up, not going to the dr anymore just feeling like staying in the bed feeling sorry for myself, which is not good because I suffer from depression.
Thank you again. I know I can't give up know matter how long it takes to get to the bottom of this I have to keep going. I think I'll make some little post myself as a reminder not to give up on a daily basis.
Heather it brought tears to my eyes as well
Help
sorry I misspelled your name, fingers are a little crampie, was not intention again welcome
God Bless, I am new to this group of wise, wise people. I am the mother of Les. She has had MS for 22yrs. MRI's were experimental. So MUCH needs to be done. Let's all get"LOUD" and PROUD ,as they say. Keep talking, Judy
Hi, I think you have posted a little here before. Have we talked? I am concerned about you stopping the medications. Did you stop all of them? It is certainly a choice that some people make, but, as well as you may know your body, the damage in MS can and usually does proceed with or completely without symptoms. A person can a first attack or two, then go years - a decade is not unusual - only to be causing quiet damage all along. Suddenly, they are stopped in their tracks by a disease that shows ten years of damage all at once and they have irreversible disability. Do they consider you to have a Relapsing form of MS?
That is the problem in seeing how long it works. By the time you get your answer you may have lost precious time that you could have slowed the disease.
You are doing no harm and very likely a lot of good with the supplements and exercise. If you are determined to stay off the DMD's you might want to explore the Swank diet also. I find the evidence for it weak, but it is healthy and has a lot of proponents.
I do wish you the best of luck. Did you have a lot of symptoms on the Rebif?
Have you already told us all this and I missed it? Quix
That is the problem in seeing how long it works. By the time you get your answer you may have lost precious time that you could have slowed the disease.
You are doing no harm and very likely a lot of good with the supplements and exercise. If you are determined to stay off the DMD's you might want to explore the Swank diet also. I find the evidence for it weak, but it is healthy and has a lot of proponents.
I do wish you the best of luck. Did you have a lot of symptoms on the Rebif?
Have you already told us all this and I missed it? Quix
Dear all,
I am so grateful to have found such friends who can understand me and help me, thanks for all of the support, experiences, nice examples and everything. I appreciate it.
my dr said I have to take injections everyday forever... I don't wanna do that. I want to do it as naturally as possible. I don't know if I should trust the dr or do what I think is right...
take care dears and get better day by day! we will do it
I am so grateful to have found such friends who can understand me and help me, thanks for all of the support, experiences, nice examples and everything. I appreciate it.
my dr said I have to take injections everyday forever... I don't wanna do that. I want to do it as naturally as possible. I don't know if I should trust the dr or do what I think is right...
take care dears and get better day by day! we will do it
I AM VERY SORRY TO HEAR ABOUT YOUR DIAGNONIS,
YOU ARE MY OLDESTS DAUGHTERS AGE.
I WAS DX IN MAY WITH MS AND AND STARTED COPAXONE
IT IS THE ONE THAT U TAKE EVERYDAY,
I TOOK IT FOR 3 MONTH THEN I STOPPED.
I AM NOT TAKING ANY SHOTS, BUT I DO TAKE MEDS
FOR MY OTHER PROLBEMS I HAVE.
TREMORS- XANAX
PAIN - MOPHINE
SLEEPING PRO.- MARINOL
OF CAUSE THESE ARE USE ONLY WHEN NEEDED.
I AM LIVING MY LIVE THE BEST I CAN,
I READ ALOT ABOUT MS. GO TO UTUBE.COM
AND TYPE IN MS AND WATCH SOME VIDEOS, THEY REALLY HELP.
GET THE BOOK MS FOR DUMMIES IT IS THE BEST.
HOPE THIS HELPED, GOD BLESS YOU
YOU WILL BE JUST FINE.
KITT FROM NJ
YOU ARE MY OLDESTS DAUGHTERS AGE.
I WAS DX IN MAY WITH MS AND AND STARTED COPAXONE
IT IS THE ONE THAT U TAKE EVERYDAY,
I TOOK IT FOR 3 MONTH THEN I STOPPED.
I AM NOT TAKING ANY SHOTS, BUT I DO TAKE MEDS
FOR MY OTHER PROLBEMS I HAVE.
TREMORS- XANAX
PAIN - MOPHINE
SLEEPING PRO.- MARINOL
OF CAUSE THESE ARE USE ONLY WHEN NEEDED.
I AM LIVING MY LIVE THE BEST I CAN,
I READ ALOT ABOUT MS. GO TO UTUBE.COM
AND TYPE IN MS AND WATCH SOME VIDEOS, THEY REALLY HELP.
GET THE BOOK MS FOR DUMMIES IT IS THE BEST.
HOPE THIS HELPED, GOD BLESS YOU
YOU WILL BE JUST FINE.
KITT FROM NJ
Dear Kitt,
thanks for your reply. I wasn't able to connect to internet for a while, yes I have to take copaxone probably forever. I haven't started yet as it costs $1700/mo and my insurance doesn't cover it. I am a student. ...
why did you stop it? would you please explain a bit more about it. I appreciate your help,
Wish you and your family the best and a good new year dear.
thanks for your reply. I wasn't able to connect to internet for a while, yes I have to take copaxone probably forever. I haven't started yet as it costs $1700/mo and my insurance doesn't cover it. I am a student. ...
why did you stop it? would you please explain a bit more about it. I appreciate your help,
Wish you and your family the best and a good new year dear.
First you cry and then you cry some more, and finally you cry one more time. At this point it's time to get serious about this disease you where just diagnosed with.
For me, when I finally did hear the words MS it was a bit of a relief. I just wanted to find out what was wrong with me for the last 3 years. By this time I had already read about everything you can possibly read about MS because this is what the doctors suspected for a long time but would never say the word.
You should be relived that MS is not going to kill you. It can debilitate you in many ways so therefore you have medications. For me, I have never done the A<B<C< injections. I have done the steroid injections followed up with pills but other complications made me stop. When I did do them it done a whole lot of good for me. I'm going to try again but my doctor wanted me to wait a few months.
Everyone has to find what works for them. I'm still looking but I know there is something out there that will by just what I need.
Your going to be fine, but a good support group is one of the main things you will need. So stay right here because you couldn't find one better than this one.
I'll be praying,
Carol
For me, when I finally did hear the words MS it was a bit of a relief. I just wanted to find out what was wrong with me for the last 3 years. By this time I had already read about everything you can possibly read about MS because this is what the doctors suspected for a long time but would never say the word.
You should be relived that MS is not going to kill you. It can debilitate you in many ways so therefore you have medications. For me, I have never done the A<B<C< injections. I have done the steroid injections followed up with pills but other complications made me stop. When I did do them it done a whole lot of good for me. I'm going to try again but my doctor wanted me to wait a few months.
Everyone has to find what works for them. I'm still looking but I know there is something out there that will by just what I need.
Your going to be fine, but a good support group is one of the main things you will need. So stay right here because you couldn't find one better than this one.
I'll be praying,
Carol
Dear Carol,
Thanks for your reply, after two weeks I still cry whenever I think of it, I had steroids for the last two weeks (60mg, then 40mg and then 20mg) as the dose decreased the pain got more and more for me, and now I can't afford the copaxone(insurance won't pay) and don't know what to do. It is really good to have you guys with me, good to know there are people with you praying for you and taking care of you. I pray for all of you too. God is always with us and we will never give up.
Regards
Thanks for your reply, after two weeks I still cry whenever I think of it, I had steroids for the last two weeks (60mg, then 40mg and then 20mg) as the dose decreased the pain got more and more for me, and now I can't afford the copaxone(insurance won't pay) and don't know what to do. It is really good to have you guys with me, good to know there are people with you praying for you and taking care of you. I pray for all of you too. God is always with us and we will never give up.
Regards
Check with the Copaxone website. You can get your medication for free if your insurance won't cover it and you meet their income guidelines....
You're right...God is always with us. Hang in there honey. You are not alone. We all walk with you...
All the best sweetie and please let me know what you find out about the Copaxone. Looks like you and I are due to start this medication together. I should be starting mine in the next week or so. Again...we walk together.
Be well and have "HOPE." All is not lost...
Heather
You're right...God is always with us. Hang in there honey. You are not alone. We all walk with you...
All the best sweetie and please let me know what you find out about the Copaxone. Looks like you and I are due to start this medication together. I should be starting mine in the next week or so. Again...we walk together.
Be well and have "HOPE." All is not lost...
Heather
My name is Kim and let me first say I do not have MS. I have an autoimmune disease, but it is a autoimmune liver disease. It attacks the liver full fledge, as if it is a foreign part of the body. Thankfully, it was caught on time, and prednisone and a drug called 6 mmp seem to be taking care of the problem. It is, as well as MS, never goes away, but can stay controlled. Anyway, I hit this button accidentally after I was done chatting w/my email friends as well that have my disease. I wanted to say you ladies sound like a great group of gals. Such support and love in your words.
We never know why some people get sick, and why some don't, I guess its all in Gods great mysterious plan, but I read words like you've all written to help this young 27 year old female out, and I think how wonderful. You all show God's great Love. Isn't that what life is all about? The website I am on I have met 2 great ladies, that I email w/all the time. One lives in Israel and one lives in Nebraska and I am in MI. How the internet brings us all together. Anyway, I will not take up anymore of your time, but you ladies keep doing what you are doing and HOPE1980 I wish you all the best. All of you keep up the awesome words. You are so encouraging...
Take Care Everyone and stay well!!!!!!!!!!
We never know why some people get sick, and why some don't, I guess its all in Gods great mysterious plan, but I read words like you've all written to help this young 27 year old female out, and I think how wonderful. You all show God's great Love. Isn't that what life is all about? The website I am on I have met 2 great ladies, that I email w/all the time. One lives in Israel and one lives in Nebraska and I am in MI. How the internet brings us all together. Anyway, I will not take up anymore of your time, but you ladies keep doing what you are doing and HOPE1980 I wish you all the best. All of you keep up the awesome words. You are so encouraging...
Take Care Everyone and stay well!!!!!!!!!!
How sweet of you to come on the forum and say such lovely things.
All the best to you also. We wish you well as the New Year approaches and wish you good health.
Thanks again for visiting and please feel free to post anytime.
Heather
All the best to you also. We wish you well as the New Year approaches and wish you good health.
Thanks again for visiting and please feel free to post anytime.
Heather
Are you sure you have MS? Do you think doctors know everything about everything? I am 27 years old and I was diagnosed with MS exactly 6 months ago but I still refuse to start taking drugs because I want to be a 100% sure I have it. I went to see doctors about different problems 3 times in my life and all 3 times I was misdiagnosed very big time. I learned to trust doctors but verify them. I've been living on the internet all this 6 months goggling every word that has anything to do with MS. I went to see a neurologist (I spent some time trying to find the best one in town) 6 months ago because I had a numb thigh and Lhermitte's symptom. She also found 2 lesions in the brain and 2 in the spinal cord. My numbness was gone in 1 months but I still have Lhermitte's. She wanted me to start taking Tysabri but insurance company didn't appprove it because I didn't try anything else.
Avonex was choice #2. While they were fighting, I found an MS specialist. He said everything says it's MS except lack of symptoms. We decided to wait and see.........But listen what I found out. When you see a doctor, they eliminate a bunch of stuff including B12 deficiency running a blood test. Serum B12 test is a standard test that neurologist run to eliminate B12 deficiency but it's known to be too insensitive because it doesn't show B12 deficiency in the tissue. I found out that the uMMA test (they test urine) is %100 accurate and shows deficiency in the tissue. In the study 83% of individuals identified with B12 deficiency in the tissue had normal B12 in the blood. Everyone with MS diagnosis has to run the test because it's hard to distinguish MS from B12 deficiency. B12 has the same symptoms and also causes lesions in the brain and spinal cord. I called my general doctor and asked him to run a standard blood test for B12 because I didn't know about uMMA test
at that moment. He told me that it came out normal, but I still asked him to mail me copies of results. I saw that my folate was very high, I goggled it and learned that high folate masks B12 deficiency symptoms and it's level in the blood. I found this lab on the internet (Norman Clinical Laboratory) and requested the kit to test B12 in the urine. They mailed it to me and I mailed everything back and now I am waiting for results. I paid $150 for it (only big labs do this tests, Mayo clinic charges even more for it) I think it's worth it because I would be spendng much more on MS drugs. B12 deficiency can be provoked by laughing gas enesthesia at dentist's office if it's done too often with a short period of time. I don't know what my results will be but it's not a point right now because it may work for some of you here diagnosed with MS. We have to be our own doctors because our doctors will not spend as much time as we would finding explanations to our problems
- we aren't their children. Vitamin deficiency isn't a field of interests for neurologists, as well as any other problems that have nothing to do with neurology. I am saying all of this because I became totally deaf because I was misdiagnosed first time (I am fine now), 3 big scars on different parts of my body were results of second time and didn't have to have them. I hope to be right now, but at least I can say I tried :O) Good luck !!!
Avonex was choice #2. While they were fighting, I found an MS specialist. He said everything says it's MS except lack of symptoms. We decided to wait and see.........But listen what I found out. When you see a doctor, they eliminate a bunch of stuff including B12 deficiency running a blood test. Serum B12 test is a standard test that neurologist run to eliminate B12 deficiency but it's known to be too insensitive because it doesn't show B12 deficiency in the tissue. I found out that the uMMA test (they test urine) is %100 accurate and shows deficiency in the tissue. In the study 83% of individuals identified with B12 deficiency in the tissue had normal B12 in the blood. Everyone with MS diagnosis has to run the test because it's hard to distinguish MS from B12 deficiency. B12 has the same symptoms and also causes lesions in the brain and spinal cord. I called my general doctor and asked him to run a standard blood test for B12 because I didn't know about uMMA test
at that moment. He told me that it came out normal, but I still asked him to mail me copies of results. I saw that my folate was very high, I goggled it and learned that high folate masks B12 deficiency symptoms and it's level in the blood. I found this lab on the internet (Norman Clinical Laboratory) and requested the kit to test B12 in the urine. They mailed it to me and I mailed everything back and now I am waiting for results. I paid $150 for it (only big labs do this tests, Mayo clinic charges even more for it) I think it's worth it because I would be spendng much more on MS drugs. B12 deficiency can be provoked by laughing gas enesthesia at dentist's office if it's done too often with a short period of time. I don't know what my results will be but it's not a point right now because it may work for some of you here diagnosed with MS. We have to be our own doctors because our doctors will not spend as much time as we would finding explanations to our problems
- we aren't their children. Vitamin deficiency isn't a field of interests for neurologists, as well as any other problems that have nothing to do with neurology. I am saying all of this because I became totally deaf because I was misdiagnosed first time (I am fine now), 3 big scars on different parts of my body were results of second time and didn't have to have them. I hope to be right now, but at least I can say I tried :O) Good luck !!!
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