Q: Should people with MS who do not have a lot of obvious exacerbations still take a disease modifying medication? Even if they also have a spinal condition? I have had increased # of lesions. Thank You
Hi Denise,
This is my understanding (and you know that I'm not a medical professional). Patients with RRMS are recommended to being on one of the DMD. Of course, these drugs are hopefully keeping the exacerbations less frequent and less severe, while also limited the number of new lesions. The RRMS phase of disease is mostly inflammatory.
NIH researcher, Bibiana Bielekova, stated at an MS Women's Breakfast in September that "For patients who do not have contrast-enhancing lesions, current therapies do not really do much. Contrast-enhancing lesions are more sensitive to treatment."
Do you tend to have enhancing lesions? It's interesting that we haven't caught an enhancing lesion on any of my MRIs in a couple of years. And Copaxone seemed to stop working as well after about 3 years.
I'm not sure that I would accept the neurologist's reasoning for not using a DMD based on the belief that some of your symptoms are not caused by MS. If he had used a different therapy, such as the belief that your disease was no longer inflammatory or relapsing, then I would probably accept his recommendation.
Now, is your neuro simply refusing to prescribe a medication? I would like to hear that story, if so.
Denise, I read your question and Lisa's response. I read where someone said that contrasting lesions do not indicate the need for DMT's. I still politely disagree (I also am not a medical person). I know that MS is always going on inside of us, whether we are having an exacerbation or not. That is a proven fact. Because of that, I want to know I have one of the DMT's in my corner in case the MS surfaces and I begin having an exacerbation. There are people who go for years with no signs of MS and are still on DMT's. It's like taking out extra insurance to cover you in case of an accident. I feel better knowing that I have my medication in my corner, just in case. That's worked for me for the past 14 years......and everything is better now than when I was diagnosed 25 years ago and I was sent home to rest!
Dear Cathy,
Thank you for your comment. I agree that MS stays with you and mine has progressed quite significantly, even though it doesn't always show up in MRIs. It has in some, but I think lately the timing has just been off. If it wasn't progressing I don't think my vision would have gotten so bad. I now have constant double vision that is always blurry and at times it is difficult for me to see at all. My neuro-optholmologist says that it is definitely coming from the lesions on my brain as I have had two surgeries to correct the muscles and they haven't worked. My urologist says the bladder problems I have are MS related, which they determine based on what causes the problems. And my legs and other muscles continue to get weaker and more spastic as the years go by, which is common to MS as well. Plus I have lesions on the frontal lobe, which has progressively affected my organizational skills, reading comprehension, speech, memory, etc.
It's not that I want to have MS, believe me I don't. But since I do have it, and no one says I don't it is simply an issue of my spine and the pain I have lived with for 47 years complicating the issues, especially because the pain in my low back and legs is horrific. And now I have a serious tilt to the left, so bad that I have broken two chairs in my house from leaning so far over. I do have scoliosis, which is something new, but that wouldn't cause this dramatic tilt, it might cause my shoulders to be uneven but not my whole body like this. At least that's what all of my doctors have told me. And I have cervical spondyliosis, and I don't know exactly what that might do.
In other words I am a mess. I stay as active as I can with my volunteer work with the American Pain Foundation and the MS Society, my grandsons, friends and family, and I have been doing a lot of writing which I hope to someday publish.
Thanks again for your comments and best of luck to you!
Denise,
You have so much going on all at once. Do you have one doctor who is trying to coordinate and "play" with medications to see if anything works for you - especially the pain? I hope you are comfortable with the doctors you have; I am sure you are on top of that and I trust you are knowledgeable enough to stay on top of all current research coming down the pike.
You are a survivor - 47 years with pain! You keep going, girl. I hope you book does get published because you have a lot to say and it could benefit others. Your talents are apparent in your writing and the passion you hold within your "pen" (now a computer!) Keep that going - I know for me writing is important because it is my first love, and even on my bad MS days I can still do it.
Keep us posted on how you are doing - I will be keeping you in my prayers.
Have a good day,
Cathy
Thanks Cathy,
Yes, I have a wonderful pain management doctor and I now have an intrathecal pump for my pain medication, which is very helpful. It delivers my medication directly to the central nervous system and until recently my pain was completely manageable. I always have pain but I can live fine with a certain amount of it. Since I have begun to tilt so severely my pain level has gone up dramatically, in both my back, hip and left leg. It brings back terrible memories of how I felt in the 80s and 90s before I got the pump in January, 2000. It is only my MS doctor that I am not all that comfortable with, and I expect I will find a new person when I move to Long Island. I hope I can find someone a little more compassionate.
I also hope I publish my work and I will let you know if I do. I hope you are writing with a publishing goal in mind. Do you participate on any writing websites? Some are great and you can get some good feedback on your writing, and I don't mean classes I mean for fun. FanStory is good and others l ike that.
Take care, hope you are having a day with less pain.
Denise
Thanks, Denise. If you need help finding a dr. in LI let me know. I used to work for the Consortium of MS Centers/IOMSN and I have a few people I keep in touch with who can help.
Thanks Cathy, I will keep that in mind. Do you live on Long Island? I am most concerned about accessible transportation, do you know how that works on the Island? I know it exists, I just hope it is easier to use than what we have in here. Have a good day. Denise
Denise,
I do not live in LI so I cannot help you there. Sorry! Perhaps NMSS can help get you on the right path of finding out about accessible transportation.
Thanks, I know they have an active chapter on LI. Take care. Denise
Important:
We hope you find this general health information helpful. Please note however, that this Q&A is meant to support not replace the professional medical advice you receive from your doctor. No information in the Answers above is intended to diagnose or treat any condition. The views expressed in the Answers above belong to the individuals who posted them and do not necessarily reflect the views of Remedy Health Media. Remedy Health Media does not review or edit content posted by our community members, but reserves the right to remove any material it deems inappropriate.
Test Your MS Knowledge 
10 Symptoms That Could Be MS 
10 Foods That Fight Inflammation 
Unusual Multiple Sclerosis Symptoms Featuring Content From:
- About Us |
- Contact Us |
- Privacy Policy |
- Terms of Use |
- Security Policy |
- Advertising Policy |
- Advertise With Us
By using this service, you accept our Terms of Use. Please read them. The consumer health information on is for informational purposes only and is not a substitute for medical advice or treatment for any medical conditions. You should promptly seek professional medical care if you have any concern about your health, and you should always consult your physician before starting a fitness regimen. Copyright © 2013 Remedy Health Media, LLC. All Rights Reserved.
Hi Lisa,
Thanks for your reply. I have been told that MRI's are only showing what is happening at the moment it is taken, so I might show enhancing images if MRIs are taken at a different time. It begins to get to the point where I don't know what to believe anymore. Yes, he keeps saying that there is no reason for me to take the DMD because I don't have definitive exacerbations. Part of that is my fault; I don't call or go see him when I am having an exacerbation because I don't feel I am taken very seriously. There have been a few times when I show him a symptom that is very obvious to his Fellows and others in his office and he says something like, "No that isn't happening." Now maybe he means it isn't MS making it happen, but I'm afraid our communications aren't very good anymore. I know better than to stay with him, and I tell others all the time to find a doctor that you are most comfortable with and can communicate with and here I am not doing it myself. I haven't wanted to change because I had been considering moving for the last two years and have finally decided to do that so I will need to find a new neurologist anyway. I am dreading the process of finding new specialists for all my symptoms, but I am most hoping I find a good MS Neurologist. Maybe I should wait and see what that doctor says and then take it from there?
I appreciate your response. it used to be a definite yes, take the DMD. But now you say that isn't always the case anymore so I guess it doesn't do any harm to wait. You always provide such wonderful informative information, Lisa. I cannot thank you enough.
Best,
Denise