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
I have a B12 deficiency along with MS. My doctor told me that thats probably why it took so long to get a MS diagnosis. I have been giving myself B12 shots for 3 years but the MS has done so much damage I don't see any difference.
I'll be praying,
Carol
I'll be praying,
Carol
Hi everyone, I am so thankful for all your comments and lovely kind words, I appreciate your support.
to Anya : thanks for reading all the posts just to help me out, yes I am B12 deficient and I have lesions(spinal cord) but the neurologist never thought that B12 might be the reason, she is just so sure about MS. I will see another doctor then.
I am applying for copaxone assistance program now. I was on steroids and as soon as I got off of them all the symptoms are back, knee pain, hand and feet numbness and tingling, I also have problem remembering very easy things, I feel weak in my legs nowadays too.. it will take 6-8 weeks for them to evaluate the application and I hope not to have more problems over this period.
my very lovely friends , HAPPY NEW YEAR, take good care of yourselves and pray for all of us,
very best regards thanks to all of you.....
to Anya : thanks for reading all the posts just to help me out, yes I am B12 deficient and I have lesions(spinal cord) but the neurologist never thought that B12 might be the reason, she is just so sure about MS. I will see another doctor then.
I am applying for copaxone assistance program now. I was on steroids and as soon as I got off of them all the symptoms are back, knee pain, hand and feet numbness and tingling, I also have problem remembering very easy things, I feel weak in my legs nowadays too.. it will take 6-8 weeks for them to evaluate the application and I hope not to have more problems over this period.
my very lovely friends , HAPPY NEW YEAR, take good care of yourselves and pray for all of us,
very best regards thanks to all of you.....
You know people will always tell you that they have similar symptoms, but their doctors did not dxd them MS, they were dxd with something else, which to their understanding is worst than MS. If you believe that your doctor is right follow your instincts, You are the only one who understands your body better than anyone else. Call the Copaxone people, they have programs that will help you get your medication, it like a sponsorship program, because even though their product is very expensive, they also know that not everyone can afford it. These big companies, they get profiits from their products, but they also care about people and their treatment. Most of these companies have great customer servicce departments with employes who have vast knowledge about the disease and how to treat it. There may also be some who may have MS, who know exactly what you are going through. Clever, hah????
I have been dealing with MS for the past 14 years and it has been like a roller coaster. I can tell you that I have good days and not so good days and some terrible days. The best that has happened to me recently is that I stumbled into this forum on 12/16/07 and I have not stopped going at leat once a day (you can read my story on this same forum I am not sure but I think it is called How long did take to get a diagnosis?)
Just keep your faith, do a lot of research, there are plenty of books that can help understand what you are going through and how to cope with it. Of course, you can always come to this forum where you can post a question and someone may have the answer for you.
You know crying has helped a lot. I does not make you less of a human being or it does not state that you are in denial. It is just that at some point your life took a 180 degree turn, but it never gave you a short notice before taking it. We are only humans and a good cry always makes us feel better.
Your name is great, because you always have HOPE, we have to look for it.
Take good care of yourself, Zulma (Gooddays)
I have been dealing with MS for the past 14 years and it has been like a roller coaster. I can tell you that I have good days and not so good days and some terrible days. The best that has happened to me recently is that I stumbled into this forum on 12/16/07 and I have not stopped going at leat once a day (you can read my story on this same forum I am not sure but I think it is called How long did take to get a diagnosis?)
Just keep your faith, do a lot of research, there are plenty of books that can help understand what you are going through and how to cope with it. Of course, you can always come to this forum where you can post a question and someone may have the answer for you.
You know crying has helped a lot. I does not make you less of a human being or it does not state that you are in denial. It is just that at some point your life took a 180 degree turn, but it never gave you a short notice before taking it. We are only humans and a good cry always makes us feel better.
Your name is great, because you always have HOPE, we have to look for it.
Take good care of yourself, Zulma (Gooddays)
When I posted my thoughts, I am sorry didn't read others and your post, where you mentioned your B12 deficiency. I just wanted to share what I found out as fast as I could. Everywhere I read, you have to have vitamin B12 shots if you are B12 deficient (they are cheap). B12 deficiency is a disease on its own. I am not a doctor but, please, read about B12 deficiency, it's not a sign of MS, it can develop but it also can be a separate disease. Untreated B12 deficiency is not a joke. I never took vitamin deficiencies seriously myself before I read about them. I read on this same web-site (under Nutrition)stories about people with MS who found out in 5 years of having MS, that they were B12 deficient. They started shots of B12 and they have no symptoms and no lesions for 10 years. I wish MS wasn't as complicated....
I have read that Omega-3 fatty acids (found in fish oil) is very good for people with MS, as well as healthy people. Omega-3 fatty acids contain eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA), which are known to affect key blood proteins (matrix metalloproteinase-9; MMP-9) and are produced by the immune cells of individuals with MS. A new study evaluating the effects of omega-3 on MMP-9 in patients with MS suggests that the intake of fish oil, containing omega-3 fatty acids, may have potential benefit in MS by decreasing MMP-9 levels.
When I was just diagnosed with MS, the first thought that came to my mind was that it was caused by stress and my obsessive-compulsive nature. I didn't have a doubt. I had so much stress for the last 10 years starting with working on Master's Degree for 6 years, then lots of family issues and then my step-father's suicide because he thought he had cancer when he didn't. I was crying for a week non-stop and then I developed numbness and Lhermitte's. Now I am so confused but still not ready to admit but afraid to waste any time. I am still fighting and the more I read, the more confused I become. I wish they invented like a pregnancy test only for MS.....I hope all this people that work on MS research, are looking for answers in the right place....
I have read that Omega-3 fatty acids (found in fish oil) is very good for people with MS, as well as healthy people. Omega-3 fatty acids contain eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA), which are known to affect key blood proteins (matrix metalloproteinase-9; MMP-9) and are produced by the immune cells of individuals with MS. A new study evaluating the effects of omega-3 on MMP-9 in patients with MS suggests that the intake of fish oil, containing omega-3 fatty acids, may have potential benefit in MS by decreasing MMP-9 levels.
When I was just diagnosed with MS, the first thought that came to my mind was that it was caused by stress and my obsessive-compulsive nature. I didn't have a doubt. I had so much stress for the last 10 years starting with working on Master's Degree for 6 years, then lots of family issues and then my step-father's suicide because he thought he had cancer when he didn't. I was crying for a week non-stop and then I developed numbness and Lhermitte's. Now I am so confused but still not ready to admit but afraid to waste any time. I am still fighting and the more I read, the more confused I become. I wish they invented like a pregnancy test only for MS.....I hope all this people that work on MS research, are looking for answers in the right place....
I know about the test but I don't want to bother my doctor with "living in denial" requests to test me for everything I can think about. I also realize that you have MS or you don't. It's hard to relate when you don't go through this newly diagnosed nightmare. You go through stages... I do have another appointment coming in January to have another MRI !!! I never give up and it really works. Thank you for taking time to read my story.
Hi there. I can well understand that you don't want a diagnosis of MS. No one would, of course. I do hope, though, that you are not 'in denial' about a real diagnosis, because MS will not be in denial about you. I truly mean no harm or sarcasm here. I just want you to understand that MS is an insidious disease that is at work 100% of the time, whether or not you have symptoms. A delay in treatment could mean painful, serious and sometimes permanent deficits. Please reconsider this issue as you continue to research the alternatives.
As to B12 deficiency, you are right that this can be a huge MS mimic, particularly if it results in Pernicious Anemia. You are also right that dietary supplements can mask an underlying inability to absorb B12. This is usually an autoimmune disease that can do great harm. However, there are readily accessible ways of testing for this deficiency, regardless of what preliminary blood work shows. The most commonly used exam is called the Schilling test. This monitors chemicals excreted in urine over a 24 hour period, after an injection that will highlight any deficiencies. Any competent primary care doctor can order this test, and will do it if indicated. There is no need to pay $150 to a private lab found on the Internet, provided you have standard insurance.
Anya, I hope you will follow up with this and will pursue the best medical testing and care. Trying to diagnose yourself can be dangerous. Please do keep in touch here in any event.
ess
As to B12 deficiency, you are right that this can be a huge MS mimic, particularly if it results in Pernicious Anemia. You are also right that dietary supplements can mask an underlying inability to absorb B12. This is usually an autoimmune disease that can do great harm. However, there are readily accessible ways of testing for this deficiency, regardless of what preliminary blood work shows. The most commonly used exam is called the Schilling test. This monitors chemicals excreted in urine over a 24 hour period, after an injection that will highlight any deficiencies. Any competent primary care doctor can order this test, and will do it if indicated. There is no need to pay $150 to a private lab found on the Internet, provided you have standard insurance.
Anya, I hope you will follow up with this and will pursue the best medical testing and care. Trying to diagnose yourself can be dangerous. Please do keep in touch here in any event.
ess
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 !!!
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
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!!!!!!!!!!
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
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
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 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.
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 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
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
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
sorry I misspelled your name, fingers are a little crampie, was not intention again welcome
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
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
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!!!!
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
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
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