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#1 | |||
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Member
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I just started my 7th month on Copaxone and went in for a MRI last Wednesday. The MRI was scheduled at 7:30 am, and my appointment with my Neurologist was at 9:00 am. After completing the usual sensory and coordination tests we talked about the MRI films. My Dr. took a look at the films from that morning and compared them to the set from last spring. He said that he really didn't see any changes and felt good that the Copaxone was doing its job. This was a huge relief especially since I just went through a pretty bad episode in October and I was concerned that my brain would have lit up like a Christmas tree! I left the appointment feeling so good that the daily injections were actually working.
The next day my DH and I met for lunch and were talking about how great it was to get a good report the day before and we both were feeling quite relieved. When I got back to work after lunch, my phone was blinking with a message. When I listened to it.....my heart absolutely sank when I realized it was from my Dr. He asked me to call him back at my earliest convenience and when I do call, he wanted me to ask the nurse to put me on hold and ask that they come and find him to let him know I was on the phone. My heart started racing and the tears started to well up in my eyes...... When the Dr. came to the phone he started to apologize to me right away....I couldn't comprehend what was happening at first, but realized that he was apologizing for making a very unfortunate mistake the day before. Aparently he pulled up another patient's file, one whose name happened to be "Amy" too . That Amys last two sets of MRIs did not show any obvious changes but when he recieved the Radiologists report Thursday morning he realized that he had not been looking at my films at all the day before. When he read the report and compared my films......the results were not good. My MRI shows a significant increase in the number of active lesions and it is very clear to him that the Copaxone is not working, so he wants to see my DH and I at 8am Monday morning to discuss where to go from here. I am absolutely crushed. I can not stop crying, I have not been able to focus and I feel completely off balance. My concern is that I am not a good candidate for Interferons because of my chronic depression and now Copaxone is out, so all that is left is Tysabri, Cytoxin and Imuran .....at least I that is what I understand. I hope I can get some rest tonight.
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Amy DO WHAT makes you happy, Be with WHO makes you smile, Laugh as much as you breathe & LOVE as LONG as you LIVE . July 2006- First significant SXs, suspect it started back in mid 1990's 1/21/09 - Positive MS Dx 2/17/09 - 2nd Positive MS Dx 4/2/09 - MS Dx 3rd Neuro - finally found the Dr. who has the characteristics I was looking for . 10/8/09-optic neuritis flair, Cog Fog, chronic headaches 5/4/09 - 12/15/09 Copaxone 1/15/2010 - First Tysabri Infusion - 3/25/16 - Last Tysabri Infusion 3/3/16 - signed the documents to start the Lemtrada journey 4/25/16. Lemtrada begins. |
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"Thanks for this!" says: |
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#2 | |||
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Senior Member
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Oh Amy. First and foremost, you have my sympathy that your doctor mixed up your report from another patient.
Second, do you feel any different? Was it a surprise that you have more lesions. Are your sx's worse or was the news worse than the reality? Third, Copaxone is not a cure. If it was, EVERYONE would be on Copaxone as a first choice. It is only one of the ABCR's. Like the rest of the DMD's, it has a 30% effectiveness in reducing the possibilities of further exacerbations. That means you are in a 70% majority. But it is more about how you FEEL rather than how you feel about the news that you have more lesions. Do you take an AD? If not, start the process of finding a good one for you. MS and depression go hand in hand. I am sorry for your results. |
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"Thanks for this!" says: | DizzyLizzy (12-20-2009), Twinkletoes (12-21-2009) |
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#3 | |||
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Member
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Unfortunately, my symptoms have gotten worse. My speech is getting more slurred and my balance has not been very good either and my short term memory is getting shorter by the day. I wiped out in a parking lot about amonth ago and still have the deep scabs on my knee, and then I fell out of the van last weekend but thankfully was able to grab the car next to us to break my fall. I have been trying to ignore the sx's....but it's getting harder to do.
I have been on ad's for about 15 years, and am monitored at least quarterly to keep me on track. I was just not expecting to have news like that I guess. My Dr. really regreted having to tell me this information....I'm sure it is not a conversation he would want to have with anyone. I do not blame him though, he's human and that is exactly what I wanted in a Dr..... one with a "heartbeat" and one that has compassion, of which he has both.
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Amy DO WHAT makes you happy, Be with WHO makes you smile, Laugh as much as you breathe & LOVE as LONG as you LIVE . July 2006- First significant SXs, suspect it started back in mid 1990's 1/21/09 - Positive MS Dx 2/17/09 - 2nd Positive MS Dx 4/2/09 - MS Dx 3rd Neuro - finally found the Dr. who has the characteristics I was looking for . 10/8/09-optic neuritis flair, Cog Fog, chronic headaches 5/4/09 - 12/15/09 Copaxone 1/15/2010 - First Tysabri Infusion - 3/25/16 - Last Tysabri Infusion 3/3/16 - signed the documents to start the Lemtrada journey 4/25/16. Lemtrada begins. |
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"Thanks for this!" says: | Aarcyn (12-20-2009), Debbie D (12-21-2009), dmplaura (12-21-2009), NurseNancy (12-22-2009), SallyC (12-21-2009), Twinkletoes (12-21-2009) |
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#4 | |||
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In Remembrance
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Oh, Amy, I am so sorry.
![]() ![]() I hope you find something that works for you.....Don't forget about LDN.. ![]()
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | DizzyLizzy (12-20-2009), Twinkletoes (12-21-2009) |
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#5 | |||
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Magnate
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Copaxone takes at least 6 months to begin showing a positive effect (slowing progression is the ideal). As others have mentioned it's not a cure, and it won't work for every person on it.
With that said, if you've tried the other options and it's a last shot, I'd still give it a chance if your budget allows. Or get a second opinion maybe? I still feel that 6 months on Copaxone is not enough time to be looking to MRIs to see if it's working or not. I'm very sorry regardless to hear that your MRIs were showing a lot of progression, and that your doctor called you with someone else's info ![]()
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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"Thanks for this!" says: |
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#6 | |||
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Member
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I have not even investigated LDN yet.....I guess I am still hoping that I will wake up from this nightmare....
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Amy DO WHAT makes you happy, Be with WHO makes you smile, Laugh as much as you breathe & LOVE as LONG as you LIVE . July 2006- First significant SXs, suspect it started back in mid 1990's 1/21/09 - Positive MS Dx 2/17/09 - 2nd Positive MS Dx 4/2/09 - MS Dx 3rd Neuro - finally found the Dr. who has the characteristics I was looking for . 10/8/09-optic neuritis flair, Cog Fog, chronic headaches 5/4/09 - 12/15/09 Copaxone 1/15/2010 - First Tysabri Infusion - 3/25/16 - Last Tysabri Infusion 3/3/16 - signed the documents to start the Lemtrada journey 4/25/16. Lemtrada begins. |
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"Thanks for this!" says: | SallyC (12-21-2009), Twinkletoes (12-21-2009) |
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#7 | |||
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Wisest Elder Ever
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It's definitely worth a try. You can even take it while still giving Copaxone a chance.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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"Thanks for this!" says: |
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#8 | |||
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Member
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Hi Amy, I'm so sorry to hear the news about Copaxone and the doctor misreading the film. That happened to me once too--I had my first appointment with the neurologist at a big MS clinic and she had put the wrong films up and started discussing them. What she was saying made no sense to me at all...I thought I was having cognitive problems until my husband noticed on the film in the lower corner that it was someone else's name. She had to go find my films and bring them back and start over. Needless to say, she was embarassed. Sounds like your doctor just had a mixup with Amys. But I know it is extremely upsetting and I am sorry you thought you had good news and then suddenly got the bad news.
I couldn't tolerate Copaxone (systemic side effects) and the interferons put my depression into a tailspin in only 2 1/2 weeks on them. So I went to Tysabri. It is an overwhelming prospect to go on a much stronger scarier drug but it has helped me so much and I'm glad I made the choice to try this. Good luck with your decision for a new drug and I hope you feel better soon. ![]() ![]() ![]()
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On Tysabri and love it. . |
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"Thanks for this!" says: | DizzyLizzy (12-21-2009), SallyC (12-21-2009) |
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#9 | |||
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Member
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What a terrible experience for you, the relief then the shock. My heart sank when I read your thread.
Time to pick another weapon perhaps. ![]() |
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"Thanks for this!" says: | DizzyLizzy (12-21-2009), SallyC (12-21-2009) |
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#10 | |||
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Member
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Natalie, can I ask how long you have had your DX and how long you were on Copaxone before moving to Interferons and then ultimately to Tysabri? How long have you been on Tysabri? I am trying to get my head wrapped around all of this information and would like some input from others as to how they made their choice of which DMD to go on.
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Amy DO WHAT makes you happy, Be with WHO makes you smile, Laugh as much as you breathe & LOVE as LONG as you LIVE . July 2006- First significant SXs, suspect it started back in mid 1990's 1/21/09 - Positive MS Dx 2/17/09 - 2nd Positive MS Dx 4/2/09 - MS Dx 3rd Neuro - finally found the Dr. who has the characteristics I was looking for . 10/8/09-optic neuritis flair, Cog Fog, chronic headaches 5/4/09 - 12/15/09 Copaxone 1/15/2010 - First Tysabri Infusion - 3/25/16 - Last Tysabri Infusion 3/3/16 - signed the documents to start the Lemtrada journey 4/25/16. Lemtrada begins. |
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