HealingWell
Search Close Search
☰

Looking for Answers or opinions, not Diagnosis

Support Forums
>
Multiple Sclerosis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/15/2007 12:23 AM (GMT 0)
I posted a few weeks ago that I was in Limbo.  Not much better now.  Just saw neuro who said C-spine and T-spine MRI's do not show MS signs, but evoked potential tests she said "are a mess"  Brain MRI showed lesions.  I had a lumbar puncture on Wednesday and was sent home with information on Avonex and Betaseron.  She want to start me on one of these regardless of the results from puncture test.  She said I have "Unspecified ___________ Syndrom"  Brain fog made me forget what she said. 

 

I would like to know if anyone is taking either of these treatments, and what are your thoughts on them.  I love reading this site and enjoy all in info.  Looking forward to getting to know you.

Thanks for taking time to respond.

Posted 9/15/2007 12:33 AM (GMT 0)

CO_shortie said...
I posted a few weeks ago that I was in Limbo.  Not much better now.  Just saw neuro who said C-spine and T-spine MRI's do not show MS signs, but evoked potential tests she said "are a mess"  Brain MRI showed lesions.  I had a lumbar puncture on Wednesday and was sent home with information on Avonex and Betaseron.  She want to start me on one of these regardless of the results from puncture test.  She said I have "Unspecified ___________ Syndrom"  Brain fog made me forget what she said. 

 

I would like to know if anyone is taking either of these treatments, and what are your thoughts on them.  I love reading this site and enjoy all in info.  Looking forward to getting to know you.

Thanks for taking time to respond.

I think that if the brain MRI showed lesions, and your evoked potential tests "are a mess", and the neuro is offering information on Avonex and Betaseron, you're no longer in limbo. You have MS. She's waiting for the lumbar puncture to actually say the words, but I'd be way surprised if the diagnosis changed.

I am on Betaseron, have been on it for 14 years.  I am convinced it has slowed the course of my disease.  I have had only one exacerbation in those 14 years, about 2 years after starting the Betaseron, but none since.  Note that I am not significantly improved (i was significantly disabled when starting the Beta, and still am), but I'm not significantly worse, either.  I think the sooner you start on one of them the better your chances of diminished disability, even with MS.

Posted 9/15/2007 11:36 AM (GMT 0)
I was pretty much in the same situation as you. evoked potential were borderline, mri showed lesions, tons of classic ms symptoms. I was put on avonex, before I had the lumbar puncture. It did come out negative. But I got a dx of ms and was told to keep taking the avonex. That was about a year ago. In that year ms symptoms are still there, some are not as bad as what is was at the beginning (or maybe I'm use to them now?) and I've gotten a few more, nothing that i can't handle though. I have my good days and not so good days. I chose the avonex because it was only one injection a week. I had a huge fear a needles! I still don't like them, but then again, who does? But I'm proud to say that I overcame the fear. If you have any questions about it feel free to ask.
Jen
Posted 9/17/2007 3:39 AM (GMT 0)
Thanks so much for the answers. I have been researching prices of the meds and WOW, not sure I will be able to swing them. We do have insurance but think we have to pay 35% for name brand meds. Guess time will tell. Again, thanks. Being able to chat here makes me feel so much better, to know that I am not in this alone. Blessings to all.
Jan
Posted 9/17/2007 9:45 AM (GMT 0)
There is alternative funding for people with no insurance or a high co-pay. I'm going through that right now. My co-pay tripled after a year. Avonex active source is trying to find funding for me, I'm praying that they can find something to help me out.
Posted 9/17/2007 7:22 PM (GMT 0)
Hey Jen

Good to see u! Sorry i missed u thus far, but wanted to let u know i'm very sorry for u'r dx. As Uppitycats said, it seems clear that u have a dx now and are no longer in limbo. I do hope things will work out for the Avonex, but wanted to add that many doctor offices have a 'person' who acts as advocate on behalf of the patient, working to find ways to help them get meds or alleviate some of the costs. U may want to mention this to u'r doc and see if they have a person on staff who can help. Take care and let us know how u'r doing with this.
Posted 9/17/2007 7:42 PM (GMT 0)
Check with your insurance.  These med's are considered treatments not prescriptions by my insurance and covered 100%.

Posted 9/19/2007 5:27 PM (GMT 0)
Jen- You can also call the manufacturer of Avonex, they should have Patient Assistant Program forms they can send you, you fill out your part, take it in to your doc to fill out his part, it can take a few months, but you just may be able to get some assistance. It is all based on income, number of people in the household, etc.

I've filled out many of these forms when I was working as a Certified Medical Assistant for patients. It really isn't too hard and the docs don't seem to mind. They want you to get the treatment, no matter how it is paid for. Good luck, let us know what you find out. Oh - also, Montel has his prescription assistance program, him being dx'd with MS and all. Check out his website, there may be more info there as well.

Kimmers
Posted 9/20/2007 3:13 PM (GMT 0)
Co_Shortie, as everybody mentioned if you can not afford the avenox (biogen) will do all that is possible to see that you are able to take it. I have been on avonex for 6 years now. I am happy to say still up-right with some issues like we all have.The thing that is sooo frustrating (to me anyway) is that there is help for seniors and children but when you are middle aged and have a chronic condition you just sort of slip through the cracks.And as we know ms strikes in the prime of your life usually.If you can get started on one of the therapies try to..Is not a cure....but can slow progression.The limbo thing again everybody with ms went through it.Good Luck to you...pokey79
Posted 9/22/2007 7:09 PM (GMT 0)

I personally did not have good luck with Avonex.  I was diagnosed in March 2001 when I noticed some heaviness in my right arm and left leg.  I was put on Avonex in May 2001 and had a major attack in Setptember 2001. I quit the Avonex a year later and switched to rebif which had the same result. 

Good luck in your search

Posted 9/23/2007 1:14 AM (GMT 0)
None of the drugs promises to stop ALL exacerbations, or stop ALL progression. They DO promise to slow the course of the disease, to reduce the number and intensity of exacerbations. I started Betaseron, then had a major exacerbation 2 years later. I continued the Betaseron, and have had none since. I've been on it for 14 years now.
✚ New Topic ✚ Reply