Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 Welcome aboard, , to the Good Ship, "Multiple Surprises!" I think that the plan you describe has many positive aspects, especially in view of your disease progression. Go for it! I find (I take Copaxone, formerly took Avonex) that a daily injection sure beats rapid progression, or brain atrophy, or all the other joys of MS. I am sorry that you do have our delightful condition, but want to thank you for choosing this group to join! I hope you will find us as charming, informative, and yes, even enter taining as we thing we are--on our better days! Love to you and to those close to you. Just pull up a nicely padded deck chair on our cruise ship to better treatment and ultimately a cure/prevention. We have our own nice, cool swimming pool on this cruise ship, too, so just feel free to dive right in. Our fearless leader is the best and this group has gotten me through so much! n Rojas, age 69, wMS, diagnosed at age 19! Still kicking! Do NOT give up hope! Newbie Hi All, I just joined last night, I need other people who know what I'm going through. My name is , I have a hubby and 2 teens and a 1 year old foster child. This is my story... about 3 years ago I had my first symptom, I was 34. I then had several symptoms and went to my doctor, then several doctors. My only test that came back postive was my MRI, which I had 3 lesions. Well, I was unable to get diagnosed with that, according to these doctors. So I gave up - too many medical bills (my daughter had just had cancer the year before- she is in remission now) so I went on living, putting MS and my symptoms 'out of my head' and I went on a low fat diet and tried to stay healthy. That brings me to now. I went to a conference on MS. The doctor said that it is very important to get on treatment as soon as possible. So I made an appointment with him, had another MRI, which showed 2 more lesions- so now I have that 'diagnosis'. Now, I wanted to get treatment started, but still finanically strapped. The doctor is 250 miles away (round trip) and we had an old van. So first we went and bought something more dependable. Next I decided on a clinical trial, because it is free for 3 years. It is a trial where I will get either Avonex, Copaxone, or both. So I will being getting some drug. The doctor said that he will probably know which one, based on side effects. So that means I will be giving myself 8 shots a week. That is alittle hard for me to think about! I start on May 5th. I'm wondering how everyone else has dealt with injections? I will be doing them on my own, my husband would pass out if he saw a needle! Thanks for having me ! No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.1.392 / Virus Database: 268.5.1/326 - Release Date: 4/27/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 Hi , It's good to have you here with us. I know you will find that this is a close knit bunch, who really care about the welfare of others. We've got some pretty smart people here. And what they don't know, often leads to research. Someone usually comes up with a remedy. I am on Rebif. Injecting myself 3x's a week. It's not so bad. (The shots, that is.) I couldn't imagine having to do it everyday or even 8x's a week. I'm having problems with just finding new areas myself. But, that's just me. I'm new at this and still learning. Although, I was diagnosed in 1985, I didn't start getting any real treatment until recently. Once again, I'd like to welcome you to the group. God bless...Val -- Re: Newbie Welcome aboard, , to the Good Ship, "Multiple Surprises!" I think that the plan you describe has many positive aspects, especially in view of your disease progression. Go for it! I find (I take Copaxone, formerly took Avonex) that a daily injection sure beats rapid progression, or brain atrophy, or all the other joys of MS. I am sorry that you do have our delightful condition, but want to thank you for choosing this group to join! I hope you will find us as charming, informative, and yes, even enter taining as we thing we are--on our better days! Love to you and to those close to you. Just pull up a nicely padded deck chair on our cruise ship to better treatment and ultimately a cure/prevention. We have our own nice, cool swimming pool on this cruise ship, too, so just feel free to dive right in. Our fearless leader is the best and this group has gotten me through so much! n Rojas, age 69, wMS, diagnosed at age 19! Still kicking! Do NOT give up hope! Newbie Hi All, I just joined last night, I need other people who know what I'm going through. My name is , I have a hubby and 2 teens and a 1 year old foster child. This is my story... about 3 years ago I had my first symptom, I was 34. I then had several symptoms and went to my doctor, then several doctors. My only test that came back postive was my MRI, which I had 3 lesions. Well, I was unable to get diagnosed with that, according to these doctors. So I gave up - too many medical bills (my daughter had just had cancer the year before- she is in remission now) so I went on living, putting MS and my symptoms 'out of my head' and I went on a low fat diet and tried to stay healthy. That brings me to now. I went to a conference on MS. The doctor said that it is very important to get on treatment as soon as possible. So I made an appointment with him, had another MRI, which showed 2 more lesions- so now I have that 'diagnosis'. Now, I wanted to get treatment started, but still finanically strapped. The doctor is 250 miles away (round trip) and we had an old van. So first we went and bought something more dependable. Next I decided on a clinical trial, because it is free for 3 years. It is a trial where I will get either Avonex, Copaxone, or both. So I will being getting some drug. The doctor said that he will probably know which one, based on side effects. So that means I will be giving myself 8 shots a week. That is alittle hard for me to think about! I start on May 5th. I'm wondering how everyone else has dealt with injections? I will be doing them on my own, my husband would pass out if he saw a needle! Thanks for having me ! No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.1.392 / Virus Database: 268.5.1/326 - Release Date: 4/27/2006 Font CluffHmkBold Art by Engelbreit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 First, welcome to the group, you've found one of the best resources on the net! Second, sorry to hear your child went through Cancer but very glad to hear it is in remission. I am curious about the trial, you say 8 shots a week? Copaxone usually is a one shot a day med, and Avonex is 1 shot a week, so you will be using both? Good luck to you! I have been on Rebif, not good for me, and Copaxone, also not good. Now I do it all with supplements and have recently started LDN. Now just because *I* have not had luck with Copaxone, do not let that taint your experience, there are many, many people who do just fine on it and would be loathe to quit! Best of luck to you and do not hesitate to ask questions or share thoughts and experiences! Peace and Blessings ~*~ Akiba ~*~ Pragmatic Visionary http://yodamamma.blogspot.com/ -- Newbie Hi All, I just joined last night, I need other people who know what I'm going through. My name is , I have a hubby and 2 teens and a 1 year old foster child. This is my story... about 3 years ago I had my first symptom, I was 34. I then had several symptoms and went to my doctor, then several doctors. My only test that came back postive was my MRI, which I had 3 lesions. Well, I was unable to get diagnosed with that, according to these doctors. So I gave up - too many medical bills (my daughter had just had cancer the year before- she is in remission now) so I went on living, putting MS and my symptoms 'out of my head' and I went on a low fat diet and tried to stay healthy. That brings me to now. I went to a conference on MS. The doctor said that it is very important to get on treatment as soon as possible. So I made an appointment with him, had another MRI, which showed 2 more lesions- so now I have that 'diagnosis'. Now, I wanted to get treatment started, but still finanically strapped. The doctor is 250 miles away (round trip) and we had an old van. So first we went and bought something more dependable. Next I decided on a clinical trial, because it is free for 3 years. It is a trial where I will get either Avonex, Copaxone, or both. So I will being getting some drug. The doctor said that he will probably know which one, based on side effects. So that means I will be giving myself 8 shots a week. That is alittle hard for me to think about! I start on May 5th. I'm wondering how everyone else has dealt with injections? I will be doing them on my own, my husband would pass out if he saw a needle! Thanks for having me ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 Hi : I'm sorry I didn't write sooner in response to your introduction. I am glad to have you here! So they couldn't dx you with THREE lesions??? Hmmm.... I'm glad you've finally gotten your diagnosis so you can get treatment. So you will be treated with one of the drugs you mentioned? (Avonex, Copaxone) Did you know that there are drug manufacturers who give medications for free to those who have a financial need? If you need a medication to treat any of your symptoms and can't afford it you can do a search for the company to find out if they have a patient assistance program. Keep us all posted on your treatment! Sharon (group owner) wrote: Hi All, I just joined last night, I need other people who know what I'm going through. My name is , I have a hubby and 2 teens and a 1 year old foster child. This is my story... about 3 years ago I had my first symptom, I was 34. I then had several symptoms and went to my doctor, then several doctors. My only test that came back postive was my MRI, which I had 3 lesions. Well, I was unable to get diagnosed with that, according to these doctors. So I gave up - too many medical bills (my daughter had just had cancer the year before- she is in remission now) so I went on living, putting MS and my symptoms 'out of my head' and I went on a low fat diet and tried to stay healthy. That brings me to now. I went to a conference on MS. The doctor said that it is very important to get on treatment as soon as possible. So I made an appointment with him, had another MRI, which showed 2 more lesions- so now I have that 'diagnosis'. Now, I wanted to get treatment started, but still finanically strapped. The doctor is 250 miles away (round trip) and we had an old van. So first we went and bought something more dependable. Next I decided on a clinical trial, because it is free for 3 years. It is a trial where I will get either Avonex, Copaxone, or both. So I will being getting some drug. The doctor said that he will probably know which one, based on side effects. So that means I will be giving myself 8 shots a week. That is alittle hard for me to think about! I start on May 5th. I'm wondering how everyone else has dealt with injections? I will be doing them on my own, my husband would pass out if he saw a needle! Thanks for having me ! Sharon (MSersLife creator/owner) “One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 , Welcome to the group. My story is similar to yours. I saw an urologist due to bladder issues and he found seven lesions on my brain after a MRI. He diagnoses a lot of MS patients when they come in for bladder problems. Surprise to me. I tried Avonex for a year and could not shake the flu symptoms. I am on Rebif now. It doesn’t give me any side effects except an occasional headache. For the Avonex, remember the Tylenol and take it before bedtime. You can then sleep through some of the symptoms. Ice on the injection site helps to numb the area. Also it stings less when the shot has been brought to room temperature. Relax and you will do fine. I always remind myself that I am slowing down those lesions J I am off to give myself a Rebif shot before bed… Connie From: MSersLife [mailto:MSersLife ] On Behalf Of Sent: Sunday, April 30, 2006 9:03 PM To: MSersLife Subject: Re: Newbie Hi Sharon, Yes, I was frustrated 3 years ago because they would only diagnose me with " probable MS " and that didn't allow me to get treatment. This doctor I'm seeing now said that if he would have seen me 3 years ago, he would have put me on treatment, even if it was a clinical trial. But here I am now, glad to be doing something about the MS monster! We do have good insurance, but just our bill burdens are overwheming, so I feel very blessed to have this clinical trial. It will pay me $20 a visit, plus doctor's visits, MRIs, blod work and the drugs are free. In the trial 25% get Avonex, 25% get Copaxone, 50% get both. I am wondering if anyone has any tips on the injections??? Thanks, Re: Newbie Hi : I'm sorry I didn't write sooner in response to your introduction. I am glad to have you here! So they couldn't dx you with THREE lesions??? Hmmm.... I'm glad you've finally gotten your diagnosis so you can get treatment. So you will be treated with one of the drugs you mentioned? (Avonex, Copaxone) Did you know that there are drug manufacturers who give medications for free to those who have a financial need? If you need a medication to treat any of your symptoms and can't afford it you can do a search for the company to find out if they have a patient assistance program. Keep us all posted on your treatment! Sharon (group owner) wrote: Hi All, I just joined last night, I need other people who know what I'm going through. My name is , I have a hubby and 2 teens and a 1 year old foster child. This is my story... about 3 years ago I had my first symptom, I was 34. I then had several symptoms and went to my doctor, then several doctors. My only test that came back postive was my MRI, which I had 3 lesions. Well, I was unable to get diagnosed with that, according to these doctors. So I gave up - too many medical bills (my daughter had just had cancer the year before- she is in remission now) so I went on living, putting MS and my symptoms 'out of my head' and I went on a low fat diet and tried to stay healthy. That brings me to now. I went to a conference on MS. The doctor said that it is very important to get on treatment as soon as possible. So I made an appointment with him, had another MRI, which showed 2 more lesions- so now I have that 'diagnosis'. Now, I wanted to get treatment started, but still finanically strapped. The doctor is 250 miles away (round trip) and we had an old van. So first we went and bought something more dependable. Next I decided on a clinical trial, because it is free for 3 years. It is a trial where I will get either Avonex, Copaxone, or both. So I will being getting some drug. The doctor said that he will probably know which one, based on side effects. So that means I will be giving myself 8 shots a week. That is alittle hard for me to think about! I start on May 5th. I'm wondering how everyone else has dealt with injections? I will be doing them on my own, my husband would pass out if he saw a needle! Thanks for having me ! Sharon (MSersLife creator/owner) “One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you. " V.R. , Palmer, Alaska, where Cabbages grow huge How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Hi Mindy, Thanks for the tips! Actually, I won't know if I'm getting Avonex or Copaxone or both - well until we see what side effects I get. So if I were only to get Avonex - for example- the Copaxone shot would be a placebo. And the other way around if I get the Copaxone, the Avonex would be a placebo. Or I might get both. It isn't a new study, but an on going study called Combi RX, they are still enrolling people. We'll see how Friday goes > > > > Hi All, > > > > I just joined last night, I need other people who know what I'm > going > > through. > > > > My name is , I have a hubby and 2 teens and a 1 year old > foster > > child. > > > > This is my story... about 3 years ago I had my first symptom, I > was 34. I > > then had several symptoms and went to my doctor, then several > doctors. My > > only test that came back postive was my MRI, which I had 3 > lesions. Well, I > > was unable to get diagnosed with that, according to these > doctors. So I > > gave up - too many medical bills (my daughter had just had cancer > the year > > before- she is in remission now) so I went on living, putting MS > and my > > symptoms 'out of my head' and I went on a low fat diet and tried > to stay > > healthy. > > > > That brings me to now. I went to a conference on MS. The doctor > said that > > it is very important to get on treatment as soon as possible. So > I made an > > appointment with him, had another MRI, which showed 2 more lesions- > so now I > > have that 'diagnosis'. > > > > Now, I wanted to get treatment started, but still finanically > strapped. The > > doctor is 250 miles away (round trip) and we had an old van. So > first we > > went and bought something more dependable. Next I decided on a > clinical > > trial, because it is free for 3 years. It is a trial where I will > get > > either Avonex, Copaxone, or both. So I will being getting some > drug. The > > doctor said that he will probably know which one, based on side > effects. So > > that means I will be giving myself 8 shots a week. That is > alittle hard for > > me to think about! I start on May 5th. > > > > I'm wondering how everyone else has dealt with injections? I will > be doing > > them on my own, my husband would pass out if he saw a needle! > > > > Thanks for having me ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Hi Sharon, Yes, I was frustrated 3 years ago because they would only diagnose me with "probable MS" and that didn't allow me to get treatment. This doctor I'm seeing now said that if he would have seen me 3 years ago, he would have put me on treatment, even if it was a clinical trial. But here I am now, glad to be doing something about the MS monster! We do have good insurance, but just our bill burdens are overwheming, so I feel very blessed to have this clinical trial. It will pay me $20 a visit, plus doctor's visits, MRIs, blod work and the drugs are free. In the trial 25% get Avonex, 25% get Copaxone, 50% get both. I am wondering if anyone has any tips on the injections??? Thanks, Re: Newbie Hi : I'm sorry I didn't write sooner in response to your introduction. I am glad to have you here! So they couldn't dx you with THREE lesions??? Hmmm.... I'm glad you've finally gotten your diagnosis so you can get treatment. So you will be treated with one of the drugs you mentioned? (Avonex, Copaxone) Did you know that there are drug manufacturers who give medications for free to those who have a financial need? If you need a medication to treat any of your symptoms and can't afford it you can do a search for the company to find out if they have a patient assistance program. Keep us all posted on your treatment! Sharon (group owner) wrote: Hi All, I just joined last night, I need other people who know what I'm going through. My name is , I have a hubby and 2 teens and a 1 year old foster child. This is my story... about 3 years ago I had my first symptom, I was 34. I then had several symptoms and went to my doctor, then several doctors. My only test that came back postive was my MRI, which I had 3 lesions. Well, I was unable to get diagnosed with that, according to these doctors. So I gave up - too many medical bills (my daughter had just had cancer the year before- she is in remission now) so I went on living, putting MS and my symptoms 'out of my head' and I went on a low fat diet and tried to stay healthy. That brings me to now. I went to a conference on MS. The doctor said that it is very important to get on treatment as soon as possible. So I made an appointment with him, had another MRI, which showed 2 more lesions- so now I have that 'diagnosis'. Now, I wanted to get treatment started, but still finanically strapped. The doctor is 250 miles away (round trip) and we had an old van. So first we went and bought something more dependable. Next I decided on a clinical trial, because it is free for 3 years. It is a trial where I will get either Avonex, Copaxone, or both. So I will being getting some drug. The doctor said that he will probably know which one, based on side effects. So that means I will be giving myself 8 shots a week. That is alittle hard for me to think about! I start on May 5th. I'm wondering how everyone else has dealt with injections? I will be doing them on my own, my husband would pass out if he saw a needle! Thanks for having me ! Sharon (MSersLife creator/owner) “One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2007 Report Share Posted December 17, 2007 Hey all. My name is Sara, I'm 21 and I believe my mother has BPD. She was diagnosed with it when her and my father were going to marriage counseling about 5 years ago (?) but she doesn't accept the diagnosis. I'm new at this. I'm not sure what to write. I don't really communicate with my mom much anymore. I've read SWOE but I think I'll have to read it another 2 or 3 times to actually get all of the information in the book. My mom was the type of BP that didn't have rages towards her children. I think I can remember one significant one where she threw a huge bag full of clothes at me (while she was pregnant) because I wouldn't apologize to my brother. Other than that, I just chalked them all up to me talking back and her losing her temper. I don't know, do " normal " mothers get in yelling fights with their daughters? And then ground them for three months at a time? Well, I just thought I'd introduce myself. I was feeling bad for reading about everyone else's lives when no one knew who I was or that I was even reading. \ Sara Quote Link to comment Share on other sites More sharing options...
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